What the Doc Didn't Tell Me

New Year, New Opportunity?

2012-01-04T21:11:00.000-08:00

Wow! It's been nearly two months since I last posted on this blog. The chaos of the holidays have kept me busy, but now they are over and there's lots of news to share.

The biggest change for me in the past 60 days is that my doc switched my immunosuppressant from Prograf to Gengraf. The docs at my transplant center are going to try one of the new Hepatitis C treatments on a small group of transplanted patients and those patients must take Gengraf. I'm one of the people being offered the chance to try the treatment, which creates a dilemma for me. A year or two ago I probably would have jumped at this opportunity, but now that I feel better I'm very reluctant to go back to feeling unwell all the time, which is almost certain to happen on the drug regimen. And because my liver has become cirrhotic, I'm not confident it will work.

So what's the ride road to take? For now I've adopted a wait-and-see approach. Because it takes just four weeks to know if the meds are effective, I want to observe what happens to some of the transplant patients who take them. If it's successful, I might give it a go. Regardless of the outcome, I'm very grateful to have this choice.

In the meantime I'm trying to determine if I can handle the Gengraf side effects. The acne (ugh! face and back!) and hair growth (face and who knows where) aren't pleasant, but they fall into the "inconvenient" category. Leg cramps, night sweats, upset stomach, etc. - these are a bigger issue.

The year is off to a good start and 2012 promises to be as much of a roller coaster as ever. Here's wishing you and yours peace, grace and health.

Photo courtesy of michaelaw

Organ Transplant Recipients Twice as Likely to Develop Cancer, At Increased Risk of Developing 32 Types of Cancer

2011-11-09T00:11:00.000-08:00

A study of more than 175,000 transplant recipients reveals their significantly increased risk of developing cancer, according to a study by the National Cancer Institute (NCI), part of the National Institutes of Health, that was published in the November 2, 2011 issue of the Journal of the American Medical Association.

A news release issued by NCI stated, "Organ transplant recipients in the United States have a high risk of developing 32 different types of cancer, according to a new study of transplant recipients which fully describes the range of malignancies that occur."

Researchers discovered that the most common cancers among transplant recipients were non-Hodgkin lymphoma, lung cancer, liver cancer and kidney cancer. Of particular interest to me was the following finding: The risk of liver cancer was elevated only among liver recipients. Studies of cancer show, in this group, the occurrence of liver cancer can be partly attributed to recurrent hepatitis B or C infection in the transplanted liver, or to diabetes mellitus, which is also common among transplant recipients.
Organ transplants save lives, but there are numerous risks and challenges: Hypertension, diabetes (I was taking medication for these conditions almost immediately after my transplant), skin cancer (and 31 other types of cancer, according to this study), and much more. It's a lot to take on and for me, well worth it. But there's no denying organ transplants aren't for the faint of heart.

Photo by Johany López

The Effect of Cirrhosis on the Brain

2011-10-17T19:07:00.000-07:00

Several months prior to my transplant I began experiencing "brain fog," or hepatic encephalopathy, which the US National Library of Medicine defines as, "... a worsening of brain function that occurs when the liver is no longer able to remove toxic substances in the blood." Among the symptoms are change in sleep patterns, mild confusion, forgetfulness, mental fogginess, personality or mood changes, and poor concentration. Symptoms may become severe and life-threatening.

What is the lasting impact of hepatic encephalopathy on the brain? Doctors in Spain and Italy conducted preliminary research on this topic in a study published in the September 2011 issue of Journal of Hepatology. Researchers used advanced magnetic resonance imaging and Voxed based Morphometry analysis to assess brain tissue density of 51 healthy subjects and 48 patients with cirrhosis.

The researchers reported the following results:

Patients with cirrhosis presented decreased brain density in many areas of the grey and white matter. The extension and size of the affected areas were greater in patients with alcoholic cirrhosis than in those with post-hepatitic cirrhosis and correlated directly with the degree of liver failure and cerebral dysfunction (as estimated by neuropsychological tests and the antecedent of overt hepatic encephalopathy). Twelve additional patients with cirrhosis who underwent liver transplantation were explored after a median time of 11 months (7–50 months) after liver transplant... Compared to healthy subjects, liver transplant patients showed areas of reduced brain density in both grey and white matter.

The doctors concluded, "... the loss of brain tissue density is common in cirrhosis, progresses during the course of the disease, is greater in patients with history of hepatic encephalopathy, and persists after liver transplantation."

This study isn't definitive, given the small sample size, yet should lead to further research. Nonetheless, it's troubling information for those of us with cirrhosis. At the same time, it explains a lot. When I become forgetful, I don't just have to use my usual excuses - advancing age, menopause - and can simply blame it on liver disease.

Image courtesy of The New York Public Library. www.nypl.org

Whew! My Lab Results Improve

2011-09-14T22:10:00.000-07:00

Last week it was time to have blood work done again and I'm SO pleased to say that, for the most part, the numbers look much better. My MELD score, which was 9 two months ago and 12 last month, dropped to 8. What a relief!

My AFP test rose from 106 to 137, but I'm still not worried at this point. It would have to rise to the 400 to 500+ before I start wringing my hands.

My heptologist, a fabulous doctor, called me personally to tell me the results and discuss what's next. First, I'm going to take metformin again to help control my blood sugar. And in a month or so, I'll probably switch from prograf to cyclosporine. This change will make it possible for me to take one of the new Hep C meds, if they become available to transplant patients. I'm not sure whether I'll want to take the meds, but I'll ponder that matter if and when the opportunity arises.

In the meantime the docs will monitor my MELD score and AFP test results, and I'll be on the lookout for any signs of ascites (edema), varices (esophageal bleeding) and encephalopathy (I refer to it as "liver dementia"), which are indications of advanced cirrhosis. Mostly, though, I will enjoy this world and the people in it.

What I Wouldn't Give for a Good Night's Sleep...

2011-09-12T21:32:00.000-07:00

Chamomile tea, a nice warm bath, counting sheep - when it comes to sleep, you name it, I've tried it. But insomnia still dogs me, as it has since I was diagnosed with end-stage liver disease and told that I needed a transplant. While everyone else slumbers, I'm awake and watching TV, tired but unable to sleep. Often, it isn't until 5 or 6 a.m. that I doze off, not restfully, feeling uncomfortable about all the things I'm missing as I sleep the day away... and then the cycle repeats itself.

I've come to learn that I'm not alone. A PubMed article, "Role of Sleep Disturbance in Chronic Hepatitis C Infection," posted on the National Center for Biotechnology Information, U.S. National Library of Medicine website, reveals the following: Chronic infection with the hepatitis C virus (CHC) is associated with physical and mental symptoms including fatigue and depression that adversely affect quality of life. A related complaint, sleep disturbance, has received little attention in the literature, with the exception of sleep changes noted in cirrhosis and end-stage liver disease. We present an overview of studies indicating sleep problems in patients with CHC, with about 60% to 65% of individuals reporting such complaints. Evidence suggests that impairments in sleep quality exist independent of antiviral therapy with interferon-α and prior to advanced stages of liver disease. Further investigation of sleep disturbance in CHC patients with a mild stage of liver disease may provide important information on disease course as well as allow additional opportunities for patient support.
Unfortunately, there is no "cure" for insomnia; experts stress the importance of working with your doctor to find a solution. A Guide to Hepatitis C, Treatment Side Effect Management, is a fact sheet on the HCV Advocate website that offers basic suggestions to address insomnia, including the following:

• Make eight hours of sleep a regular habit. Sleeping less during the week and trying to catch up on the weekend doesn’t work

• Try to go to bed at the same time every night

• If you have a clock that is always lit, turn it so you can’t see the time

• Exercise every day

• If you nap, keep it short and early in the day

• Try reading before bedtime, but use a low-watt bulb

• Do not eat during the few hours before bedtime, but don’t go to bed hungry. If you eat something, choose food that is light and nutritious. Avoid spicy or greasy foods

• Take a hot bath before retiring

• If you feel you need to worry, tell yourself that you will only worry in the daytime. Make your bedroom a fret-free zone. Learn relaxation techniques to reduce stress and worrying

• Listen to relaxation tapes before retiring

• Do not lay awake in bed for more than 20 to 30 minutes. Get up, do something boring for a little while, and then go back to bed

• Your bed is for sleep and sex. If you are not doing either of these, stay out of bed

Hopefully, some of these tips will help. Here's wishing Sweet Dreams for us all.

Photo by Philippe Ramakers

What You Should Know About Liver Cancer

2011-09-08T23:01:00.000-07:00

Hepatocellular carcinoma, or liver cancer, is something that's crossed my mind - wondering if I might ever have it - but I've never sought information about it, until now, that is. The US Department of Veterans Affair website offers information about liver cancer, including this list of "Things to know about liver cancer:" * Liver cancer can cause death in a person with cirrhosis.

* Patients with cirrhosis resulting from any cause, including hepatitis C, hepatitis B, and alcohol use, have a greater risk of developing liver cancer.

* Liver cancer is one of the most common cancers in the world, especially in Asia and Africa, and it is becoming increasingly common in the United States.

* Biopsy refers to extracting a small sample of tissue with a hollow needle and testing it for liver cancer. A biopsy is sometimes needed to make a diagnosis, but imaging and blood tests can usually determine whether liver cancer is present. Biopsies of liver masses can be difficult to perform and there are some risks involved.

* Liver cancer can be treated if it is detected early, but the treatment is very specialized. Patients should discuss the details thoroughly with their health care providers.

* One excellent treatment for early-stage liver cancer is a liver transplant. This is a complicated form of treatment, because a patient first needs to be a good candidate for a liver transplant, then be evaluated at a liver transplant center and placed on a waiting list, and finally, be well enough to undergo a transplant when a donated liver becomes available.
According to the U.S. National Library of Medicine, which is overseen by the National Institutes of Health, "The (prognosis for liver cancer) is poor, because only 10 - 20% of hepatocellular carcinomas can be removed completely using surgery. If the cancer cannot be completely removed, the disease is usually fatal within 3 - 6 months. However, survival can vary, and occasionally people will survive much longer than 6 months."

Photo by Andrew Richards

Liver Cancer? Hepatitis C and the Alpha-Fetoprotein (AFP) Blood Test

2011-08-21T21:13:00.000-07:00

In my August 12, 2011 post about the results of my recent blood tests, I mentioned the alarmingly elevated level of a new blood test that my doc ordered - the Alpha-Fetoprotein (AFP) test - which is an indicator of liver cancer. When I heard "AFP" I thought of a blood test I took when I was pregnant with both of my children. I've learned that the tests are one and the same.

According to an article from Gastroenterol that was cited on HCV Advocate’s hepatitis blog: Alfa-fetoprotein (AFP) is a blood test that is used widely to detect abnormalities that may be an indication of the presence of certain types of cancers... In viral hepatitis it is a test used to indicate liver cancer... In people with chronic hepatitis C most providers will generally start monitoring for liver cancer using the AFP test and liver imaging once someone has developed severe fibrosis or cirrhosis.
As I continued my search for information about the AFP test, liver cancer and how to interpret AFP test results for people like me who have Hepatitis C and a cirrhotic liver, I found a web page about hepatic tumors written by D. Montgomery Bissell, MD, for Gastroenterology students at the University of California, San Francisco. He stated the following: As a surveillance tool, AFP is readily available and inexpensive but has many limitations. Its specificity is poor, particularly in patients with chronic hepatitis C, in whom the value often exceeds normal (in the 5-100 range, presumably on the basis of regenerative activity). False negative results are not infrequent, which is the reason for including basic imaging in routine HCC surveillance. The utility of AFP is largely two-fold: (1) A progressively rising value has much greater specificity than a single test and requires a search for HCC; (2) AFP >500 is assumed to reflect HCC even if imaging is negative, and qualifies for transplant listing. Also, a very high AFP (>1000) suggests vascular invasion and metastasis.
Given this information, my AFP test result of 106, when the normal range is about 0 - 8, isn't something I need to be concerned about today. If the level continues to rise... well, we'll cross that bridge if we ever get to it.

Photo by Franco Giovanella, www.fotolog.net/giovanella

Tackling the Itch: A Medication That Worked and the Skin Products That Helped Most

2011-08-15T15:21:00.000-07:00

For many weeks I've been vexed by severe itching. The condition is called pruritis and it's caused by my poorly functioning liver. The two meds I tried so far didn't work, so my doc prescribed a third: Cholestryramine. At last, we found something that works! What a relief. Few things are more uncomfortable than incessant itching and I'm very grateful for relief.

Note: Mark left a comment on my June 24, 2011 blog post, recommending Cholestyramine. You were right - thank you for your suggestion!

Pruritis is a condition that isn't alleviated by topical treatments. Calamine lotion and products like it are ineffective. Nonetheless, I kept my skin well moisturized - why run the risk of dry skin itch compounding the existing pruritis, right?

Here are the moisturizing products that I've been using, all of which I highly recommend: Skin Free makes my favorite skin care products. They're super-rich without being oily. The body balm is a great all-over moisturizer that I usually apply in the shower before toweling dry after bathing. And the butter stick is the best smelling moisturizer I've ever used.

My every-day, all-day-long lotion is made by Gold Bond. Obviously, Gold Bond isn't just for just for jock itch. I use the Ultimate Healing Skin Therapy Lotion. As the company states, this lotion has "... aloe to heal dry, problem skin." It's the thickest lotion I've ever used and while it costs more than other brands, to me it's well worth the money.

Lastly, I recommend Eucerin. I first used the Original Moisturizing Creme in the hospital after my liver transplant, when it was given to me by docs. I was told to put it on my lips, which were scraped and terribly scabbed by tape used to hold tubes in place. It was very healing and I'm happy to say that my lips are as good as new.

My Blood Test Results Don't Make Sense

2011-08-12T11:54:00.000-07:00

At the beginning of the week I had blood drawn and today I received a copy of the results. Some of the numbers were alarming and others had me shaking my head in disbelief.

The good news - most of the tests in my hepatic function panel (ALT, AST, GGT, etc.) are better than they've been in ages. Seriously? My liver is cirrhotic, but on paper, these tests indicate that it's doing fairly well (for me, that is - it's all relative).

Other results aren't so wonderful. My MELD score has increased to 12, a jump of three points in five weeks. The docs are chalking it up to an elevation in bilirubin and don't seem too concerned. I'm praying that it's not a trend.

Additionally, my doc is running more tests now, one of which is AFP serum (it indicates the presence liver tumors). The normal range is 0 - 8.3 and mine is 106.2. ONE ZERO SIX POINT TWO. Holy crap! My doc believes the number is elevated because of my aggressive Hep C, not because I have a tumor. Six weeks ago I had two CT scans and neither showed a tumor, which is a good sign. But I'd be lying if I didn't admit that I nearly fell off of my chair when I saw that result. I'm grateful that it had been explained to me before I saw the results.

Up next: More blood work in three weeks and an endoscopy (where a scope is run down my esophagus). And I'm not certain what else, but I'll keep you posted.

Photo by Heidi Marasigan

Walgreens Came to My Rescue Today and Gave Me Great Customer Service -- United Healthcare's Specialty Pharmacy SUCKS

2011-08-04T23:30:00.000-07:00

Nothing like a bucket of bad customer service to kick me out of my misery. Today, Walgreens was able to solve a problem in about ten minutes that UHC's in-house specialty pharmacy hasn't been able to fix in a week. My local Walgreens pharmacy has come through on so many issues - large and small - over the years that I am VERY pleased to brag about how good they are.

Conversely, there are a couple of meds that I'm required to order through my United Healthcare's (UHC, my health insurance provider) own specialty pharmacy. Although I've spent at least about an hour each day talking to a customer service rep trying to fill the order for my immunosuppressants, the matter is unresolved. Each person was nice, but no one got the job done.

At this point, the whole matter has become a comedy of errors and UHC looks like one of the worst-run companies aaround.

Walgreens, however, has been awesome.

And someone at UHC is going to receive a phone call from me, and (forgive me) shit WILL hit the fan!

No! I Wasn't Ready for This!

2011-07-19T23:52:00.000-07:00

Nine.

That's my meld score. My transplant coordinator told me and my husband in early July, as my release from the hospital for hernia surgery was being coordinated. (It was repeat surgery to try to fix the incisional hernia that developed during my original transplant: The surgery didn't work then and doesn't seem to have worked this time, either. But that's another story.)

We had my surgeon do a liver biopsy while he was in the neighborhood, so to speak, and the lab review showed that my transplanted liver is cirrhotic. So my coordinator did some math and I'm a nine.

I've spent the past month trying to find a graceful way to share this news and I'm still struggling. The hardest part - and oh, my God it was so hard - was telling my kids. They are older teens, but they still need a Mom. It's almost certain that I won't be around long enough to see them graduate from college, or marry or have granchildren. That's just not fair.

There's also so much I want to do with my wonderful husband.

I'd handle this better if I could reach a point where I'd focus on the many tasks that need to be tackled, like a will and organizing papers. However, the past five weeks have been spend recouperating. Beyond that, I still can't talk about it without crying.

What about clinical trials? Those new Hep C meds? A second liver transplant? All very unlikely for many reasons, which I'll explain in future posts.

Please excuse the pity party. I'll find helpful info to share soon. I wish every person reading this blog good luck because there's a lot of it to be found.

Photo by Alaina Cherup

Not Again! The Itching is Back

2011-06-24T21:32:00.000-07:00

About a week ago the palms of my hands began itching. My family and I were on a week-long roadtrip and I assumed it was due to the hotel laundry soap or lotion, perhaps a plant I had touched - who knows? But after a couple of days the itching spread and worsened and when I had bloodwork done this week, the mystery was solved: My bilirubin is high and I'm experiencing pruritus.

I struggled with this four months ago. Fortunately, after a few weeks my bilirubin level decreased (and finally fell into normal range) and the itching went away... until now.

There are few things more frustrating than non-stop itching. I have spots on my body that are red and irritated from scratching and I'm starting to get a bit grumpy. Ugh! I'm having hernia surgery in four days and can't imagine the combined pain-itching experience afterward. This could be interesting... and not in a good way.

Photo by SuperFantastic

Saving Your Liver May Cost an Arm and a Leg

2011-06-08T07:04:00.000-07:00

As noted in my most recent post, the FDA has just approved two new medications to treat Hepatitis C: Incivek (Vertex's telaprevir)and Victrelis (Merck's boceprevir). According to www.drug.com, Dr. Douglas Dieterich, a professor of medicine in the division of liver diseases, at Mount Sinai School of Medicine in New York City, said that the approval of Incivek and Victrelis "represent the first real advances in the treatment of hepatitis C in 13 years."

This advancement is the best news Hep C patients have received in years - but celebrations may be premature. The astronomical costs of these meds could be an overwhelming barrier to treatment.

A May 25, 2011 post on the HBV and HCV Advocate Blog featured the Fair Pricing Coalition's stance on the price set for Incivek:

...the Fair Pricing Coalition (FPC) is appalled at the price set by Vertex for Incivek,” said FPC member Lynda Dee. “The FPC is concerned that the exorbitant wholesale acquisition cost (WAC) of $49,200 per 12 week course of Incivek treatment will adversely affect the ability of people with HCV to access this new drug and that it will also set an excessively unreasonable future price point for the many HCV drugs in the pipeline.

“Merck’s Victrelis costs $48,400 for 48 weeks of treatment. Now Vertex has set a price approximately four times greater than Victrelis for twelve weeks of Incivek treatment. While we welcome a shorter course of Incivek treatment, both price points are outrageous.

The FDA label recommends that 12 weeks of Incivek be taken with pegylated interferon and ribavirin for either 24 or 48 weeks, depending on a patient’s response to the regimen. The WAC price for 48 weeks of HCV treatment with pegylated interferon and ribavirin is approximately $30,000. The $49,200 WAC price for 12 weeks of Incivek will more than double the already exorbitant 48 week price of pegylated interferon and ribavirin.

The FPC also cites an expected "...30% increase in the cost of treating side effects caused by use of the new HCV protease inhibitor drugs."

More information is available in the story and at http://fairpricingcoalition.org/.

Just last night I watched a television news show about the high quality, low cost health care available in Thailand, where hospitals are actively working to attract patients from other countries, including the US. My heptologist traveled there earlier this year and also commented on how good the health care is. Maybe we should move?

Photo by Marc Garrido i Puig

Great News for Hepatitis C Patients (Well, for Some of Them)

2011-05-29T17:12:00.000-07:00

Along with other people infected with the Hepatitis C virus, I was elated when the FDA approved two new medications - telaprevir and boceprevir - both of which have proven much more effective in achieving sustained virologic response (SVR) than the current course of treatment. For people like me who have genotype 1 Hep C, the hardest to treat, the news is especially good.

Yet I just learned that treatment with one of these new medicaations may not be in my immediate future, if at all. Turns out that immunosuppressants have a negative interaction with the drugs, so liver transplant patients with Hep C can't tolerate them; at least, not for now.

Well, this just sucks. For five years we've waited for these drugs to reach the market, hoping that this would clear my Hep C and give me a chance to be realistically hopefully, and seriously consider the future, make plans, expect to be around for a good long time, enjoy some grandchildren.

But right now, the future just seems dark.

Photo by nikstyles

There's a What?! in My Ear?

2011-05-14T22:07:00.000-07:00

Back in January I had an ear infection. It seemed silly to have this childhood illness at 51. But I've had chronic problems with my left ear since the age of two (I call it my "Achilles Ear"), so I shrugged my shoulders, saw an ENT, took the prescribed antibiotics and ear drops and assumed all was fine.

Two months later the infection was back. This time I called my primary care doctor, who phoned in an antibiotic and ear drops. Again, it cleared up.

Yet two weeks ago, the ear infection appeared for the third time. Obviously, this is a problem that needs more attention. Back to the ENT, who did a culture. Yesterday the nurse called and said the doctor wants me to use the ear drops only. Oh, and she also said that I have a staph infection.

Whoa there! Staph? That's not good. I realize staph is found on our bodies and one study I found showed that 15 percent of ear infections are caused by staph. But I'm immunosuppressed, which makes me a tad bit worried. I can't find anything online that explains what happens to people like me who have staph infections.

Tomorrow I'll talk to the ENT's nurse again, to learn what type of staph was found. Then I'll call my transplant center and, hopefully, find out what this means and what must be done to resolve the problem so it doesn't recur.

Photo by Robert S. Donovan, www.everystockphoto.com

Scanned, Poked and Prodded

2011-04-25T20:42:00.000-07:00

It's been quite a month! April is the month when I have my annual medical check-ups. So far I've had a mammogram and my teeth cleaned, and soon I'll see the opthamologist and dermatologist. I also had a bone density scan (my first).

As I type this, I'm preparing for what's probably my least favorite scan: Colonoscopy. And by preparing, I mean that I'm gagging down pints of MoviPrep and running to the bathroom. I received helpful advice from a friend and have kept the liquid very chilled (I poured it over ice in a glass before drinking) and chugged it through a straw (so I don't taste it too much). The silver lining in this cloud, besides news of a healthy colon, should be a temporary (at least) loss of weight.

After this thorough medical survey, I wonder: Why do mammograms have to be so uncomfortable? And why must prepping for a colonoscopy have to involve such a vile tasting liquid? When you consider the advances in science and medicine, these unpleasant experiences seem unnecessary.

Oh, well. Gotta run (pun intended).

Photo by Jyn Meyer

Small Signs of Progress

2011-04-24T21:53:00.000-07:00

In a sure indication that I'm recovering from the rejection episode I had last August, this week I discontinued two of my medications and decreased the dosage of another. Cartwheels!

I don't have words to express how tired I am of taking meds. One of my prescriptions requires me to take four capsules twice a day; another is three tablets twice daily. Then there are the rest of the prescribed meds and vitamins and the whole diabetes/insulin routine. The yearly cost, even on our prescription plan, is close to $2,000.

Don't get me wrong: I realize the meds are important. And I'm taking far fewer pills than I did immediately after my liver transplant (64 pills each day back then). Managing them, however, is tough because I work with three pharmacies, and at times the meds and/or dosages change weekly.

To me, fewer pills means progress, and progress makes me feel hopeful. Hooray!

Photo by Marek Bernat

Lab Results Hold Steady - My Hepatitis C "Break" Continues

2011-04-14T09:59:00.000-07:00

Yee haw! My lab results were decent - very comparable to my last set of labs in February - so I don't have to have blood drawn again for a month. That's FOUR WHOLE WEEKS!

Last year I'd guess that, on average, I had blood drawn every week-and-a-half. That's a lot of pokes with needles, including my record-setting lab visit at which nine tubes of blood were drawn.

I'm delighted and grateful for the continued break. My goal is to live in the moment and simply "be."

HUGE News for People with Hepatitis C

2011-04-05T01:36:00.000-07:00

Quadruple therapy shows 100 percent SVR for HCV patients previously unresponsive to treatment

This news is incredible, jaw-dropping and fabulous! A new Hepatitis C treatment is 100 percent effective. A weekend post in the HBV and HCV Advocate Hepatitis Blog described the research findings from a presentation at the 2011 European Association for the Study of the Liver conference:

In the quadruple therapy study, HCV patients were given four drugs in combination; pegylated Interferon-alpha (PegIFN-alpha); ribavirin (RBV); and two different direct-acting antivirals (DAAs) BMS-650032 (an HCV NS3 protease inhibitor) and BMS-790052 (an HCV NS5A replication complex inhibitor)...

Professor Heiner Wedemeyer, EASL'S Secretary General, said: "Quadruple therapy is possibly the future of HCV treatment; this study goes a way to confirming that. While it's expected that the first DAAs and triple therapy will be approved for use later this year, quadruple therapy appears to have a more profound effect on virological response, with less of a resistance problem."

The study may also provide new hope for a growing number of HCV patients who cannot be effectively treated for chronic hepatitis with current treatments.

The blog post didn't indicate when the four-med therapy will be available, but I'm hoping it's very soon. And this is news that I'll be following with great interest.

Photo by Jayanta Behera

Taking a Break from Chronic Illness

2011-04-02T21:20:00.000-07:00

Hepatitis C is a chronic illness that, like so many other diseases and conditions, requires a great deal of time and attention: Doctors visits, lab work, medication regimens, medical procedures, research and more. I refer to it as my full-time job, which isn't far from the truth. Factor in the time required to review and resolve billing and insurance issues, and it's been a job-and-a-half.

Given the time, effort and stress related to my "job," it's important to take a break from time to time. And for the past six weeks, since I met with my heptologist, I've done just that. No labs, no conversations with my transplant team, no med changes.

Ahhhh.

Tomorrow all of that changes when I go to the lab and the vampires have their way with me and my poor worn-out veins. Then I'll nervously await a call from my transplant center with the results and we'll debate whether I need another liver biopsy now or if the condition of my liver seems stable enough to wait it out until one of the new Hep C meds is available this summer. A lot is riding on the outcome of these labs - yep, my break most definitely ends tomorrow.

Photo by Sinan Acar

My Doctor is Better than Your Doctor

2011-03-23T19:39:00.000-07:00

I'm grateful to have a wonderful heptologist. OK, maybe you have a great doctor, too. But mine's best and here's why:

* She keeps abreast of the latest research and advances in her field

* She understands the dilemma her patients face when it comes to healthcare and health insurance

* My doc thinks outside the box and will consider alternatives that her peers might consider unconventional

Last month my husband and I had an appointment with my doctor and she spent at least 30 minutes with us discussing results from recent bloodwork and my liver biopsy in January. The current state of my liver and hep C have created a complicated scenario where there isn't one quick, obvious or easy plan of treatment. But I'm confident that I have the right expert guiding us on this crazy journey.

Thanks, Dr. S., for everything.

Photo by LotusHead, www.pixelpusher.co.za

This Itching Is Driving Me Nuts!

2011-02-12T09:13:00.000-08:00

I can't stop scratching! My arms, back, feet, stomach, scalp - you name it, I've scratched it until it's red and sore. I've taken to wearing my pajamas inside-out, because the tiniest bit of rough edge along the seams is too itchy. My family can't stand it and neither can I.

I have pruritus, which is an extrahepatic manifestation of Hep C. According to a fact sheet at www.hcvadvocate.org...

... Pruritus is one of the most common symptoms reported by people with hepatitis C (20%), but is more commonly found in people with advanced liver disease and cirrhosis. Pruritus is itching that may be localized to a specific part of the body such as hands and feet, but it can also be a generalized itching all over the body. Some people even report that it feels like their internal organs itch. Pruritus can be related to high bilirubin levels, autoimmune disease or dry skin, and can be a side effect of treatment. Use of moisturizing lotions, oatmeal baths or lotions, antihistamines, and cortisone creams and opiate drugs can help.

I scratched myself all night, so I'm going to slather on some moisturizer and try to take a nap now. Fingers crossed.

Photo by Orrling

FDA Gives Two New Hep C Medications Priority Review Status

2011-02-11T19:44:00.000-08:00

Back in 2006, when I had my liver transplant, the heptologists at my transplant center told my husband and me that a new medication for treating Hepatitis C was in clinical trials and would be available the following year. We heard the same news in 2007, 2008, 2009 and 2010. Our skepticism is understandable, don't you agree?

Yet it appears that in 2011 our long wait will end. The FDA is giving Priority Review status to telaprevir, which was developed by Vertex Pharmaceuticals for people with genotype 1 chronic hepatitis C. In addition, Prioirity Review has been given to boceprevir, an oral hepatitis C virus (HCV) protease inhibitor developed by Merck.

The FDA gives Priority Review designation "...to drugs that offer major advances in treatment, or provide a treatment where no adequate therapy exists... The goal for completing a Priority Review is six months." The target review date for telaprevir is May 23, 2011 (I could not find a review date for boceprevir).

Both medications show better cure rates and, for some people, reduce the treatment time. Furthermore, they will be the first drugs that directly target the Hepatitis C virus.

I don't know how quickly the drugs will reach the market after FDA approval but I hope it doesn't take long. My poor liver has taken enough abuse from this devastating virus.

Photo by Nina Briski

Genetic Research and Treatment for Hepatitis C

2011-02-10T18:51:00.000-08:00

When my doc told me that she was adding a genetic test to my standing lab work order - specifically, to identify the IL-28B polymporphism - I didn't have a clue what she was talking about. I was unaware that genetic testing was being conducted on Hepatitis C issues. Go, researchers!

Studies on this topic were released at the 2010 Annual Meeting of the American Association for the Study of Liver Diseases (AASLD) held last Oct./Nov. in Boston. In its coverage of the conference, www.hivandhepatitis.com provides a solid overview of IL-28B:

The IL28B rs12979860 SNP has 2 variations, or alleles, "C" and "T." Hepatitis C patients with the homozygous or matching C/C pattern (2 copies of the "C" allele) are most likely to spontaneously clear HCV and have the best response to interferon-based therapy. People with the T/T pattern (2 "T" alleles) have the least favorable response, while those with the heterozygous or mixed C/T pattern (1 copy of each variation) fall in between.

It appears that doctors will increasingly rely on the this test as they determine treatment strategies for Hep C. Such is the case for me. The test revealed that I am C/T. Given the outcome of my biopsy and this blood test, what treatment will be best for me? I'll find out in two weeks when I meet with my doctor.

Oops. I Spoke Too Soon

2011-01-30T21:20:00.000-08:00

The full report on my biopsy is in. There's good news and bad news. The good news: As I noted in my last post, the fat in my liver has virtually disappeared. The bad news: Everything else.

In biopsies, liver condition is measured by grade (the extent of the disease or inflamation) and stage (amount of fibrosis, or scarring). In June 2010 my liver was grade 3 (on a scale from 0 - 9) and stage 3 (on a scale of 0 - 6). Note: Stage is commonly measured on a scale of 0 - 4; my transplant center uses a different scale.

Now, my liver is grade 9 (!) and stage 4. This sucks. A lot.

I'm having a little trouble coming to terms with this news. I'm scared. And I'm fresh out of suck-it-up. But in a day or two I'll feel better and can start working on the next thing, which apparently is IL-28 phenotype, whatever that is.

Photo by Julia Freeman-Woolpert

At Last! Biopsy Results that Seem Promising

2011-01-22T19:50:00.001-08:00

Last week I had my third liver biopsy in seven months (for those who are unfamiliar, this number is well above average). The past two showed troubling results and I'm greatly relieved to receive better news this time around.

Regarding the presence of fat in my liver, I quote: "GONE :)"

That sigh of relief you heard was mine!

My liver biopsy in June 2010 showed 80 percent - 80%! - fat in my liver, which is very unhealthy and also is an inidcator of metabolic syndrome. My docs told me to lose weight and control my blood sugar better, and I did. Even hampered by the steroids I had to take after my rejection episode, which made it very tough to follow doctors' orders, I was able to keep off the weight I initially lost (the blood sugar was beyond my control, however). Nonetheless, it worked!

The lessons: Follow doctor's orders. Hope for the best and stay as positive as possible. Don't give up.

Image courtesy of DiabetesMonitor.com

Sometimes I Get Depressed

2011-01-15T11:40:00.000-08:00

Please pardon my absence. The past three months have been busy, but enough of that - it's time to blog again.

As of my last post, I'd experienced a rejection episode and was working with my docs to recover from that. Although I expected to have all that behind me by now, some of the challenges continue today. My blood work results are finally beginning to show real improvement, except that my bilirubin level still is not in the normal range.

It's taken a mountain of medication to get to this point. I've stopped, started and adjusted more meds than I care to count. Although I was initially expected to have discontinued the prednisone by now, I continue to take a small dose daily. I'm also taking CellCept. Additionally, my potassium and magnesium levels are low and I'm taking meds for that. In a nutshell, taking meds is like eating a small meal. And then there are the 4 or 5 insulin injections daily...

This frustrating regimen, which has been VERY slow to work, combined with the stress of the holidays has left me blue. I'm depressed. I hate feeling like this: In fact, last week I was in tears for several days. What the... ?! This week I was determined to turn the corner, so I created a "to do" list each day. Every item I crossed off was an accomplishment (something I had control over!) and the sense of satisfaction has been very helpful. Tomorrow I'm going to get a pedicure as a reward. I'm also going to try to get a little exercise.

I'm also going to do more blogging. A number of interesting research projects have recently been published and as I read up on them, I'll share what I learn.

Photo by Mattox

It's Liver Awareness Month - Let's Get the Word Out

2010-10-15T10:12:00.000-07:00

October is Liver Awareness Month and in recognition of this the American Liver Foundation (ALF) has posted some statistics about the prevalence of liver disease on its website. The numbers are surprising:

* More than 30 million people in the U.S. have liver disease (1 in 10 Americans).

* Liver diseases such as hepatitis C, non-alcoholic fatty liver disease (NAFLD) and liver cancer are on the rise.

* Up to 25 percent of Americans may have non-alcoholic fatty liver disease.

* Four million Americans are infected with hepatitis C and more than 1 million Americans are infected with hepatitis B.

* Approximately 15,000 children are hospitalized every year with pediatric liver disease or disorders

I believe most people don't give liver disease much thought: As ALF also noted on its site, "The liver is a vital organ – no one can survive without it - but it is a silent organ because it can be damaged without sending any signals or symptoms." I'm proof of this. I was diagnosed with hep C in the late 1980s but didn't experience any health problems until 2006, and by then it was too late - a transplant was my only option.

Take time this month to talk about liver disease with your friends and family. Help make sure they don't become a statistic.

Photo - Gray's Anatomy

Diabetes + Steroids = A Huge Challenge

2010-10-12T22:53:00.000-07:00

In my last post about prednisone and its side effects, I mentioned how it wreaks havoc on my blood sugar. Controlling my glucose levels is critical, not just for the obvious reason that diabetes is very damaging to the body but also because I'm still battling metabolic syndrome.

I've discovered a great tool to help me track what I eat and blood sugar levels/insulin use: www.livestrong.com. The nutritionist at my endocrinologist's office gave me daily goals for calories, fat, carbs, fiber and protein, and when I record my food consumption on "My Plate" on the site, it provides a detailed breakdown of these components and more. Using the basic "My Plate" tool is free and for an affordable annual fee, you can get even more services. The website offers much more information related to health, diet, exercise, you name it.

One of the biggest eye-openers for me in this process has been discovering the benefit of fiber in my diet. Before I began taking steroids, I had noticed a significant correlation between fiber consumption and blood sugar levels. Fiber helps control blood sugar levels and much more: An aritcle in the August 2010 National Institutes of Health newsletter offers detailed information about the advantages of eating more fiber.

Photo by Rob Owen-Wahl

Prednisone: The Good, the Bad and the Ugly

2010-09-28T22:36:00.000-07:00

It's been about four weeks since my liver rejection episode and it appears that things are steadily improving. My lab results are trending in the right direction (numbers are falling) and while bilirubin, ALT, AST, GGT, alkaline and the rest are still notably out of range, they are vastly improved from a month ago.

So the waiting game continues, with plenty of medication juggling to compensate for the liver issues and to accommodate changes caused by prednisone, the steroid I'm taking. I can't recall taking steroids in the past, so it's been quite an eye-opener.

Unfortunately, prednisone isn't going to give me a ripped physique. Yet I'm not gaining weight, either, which commonly happens, so I don't mind foregoing the muscles. Here's how prednisone has affected me so far, along with some of its other potential side effects:

Blood sugar - Mine is OUT OF CONTROL. Whether I eat a pint of Ben and Jerry's ice cream or a handful of plain lettuce, my blood sugar can jump to 300+ (or more). I take long-lasting insulin twice a day and short-acting insulin three or four times. I watch what I eat, as before, but need the extra insulin to keep my blood sugar in check.

Blood pressure - Had to increase my blood pressure medication.

Energy - This is a good news/bad news side effect. Steroids give you energy (no wonder athletes like them! however, they take a different type of steroid) and most days I can get more done than I have since my transplant. The flip side of this coin is that I have even more trouble sleeping. The result is that I have several really good days and then I'm wiped out.

Acne - The ridiculous back, shoulder, arm acne. Thankfully, don't have this and pray it doesn't pop up. As I told my transplant coordinator, this side effect could be a deal breaker.

Fluid retention - My ankles and feet have been retaining fluid off and on for a couple of weeks now. My doctor prescribed diuretics, but has pulled me off them due to other issues. Thankfully, the swelling is intermittent and seems to abate without the meds within a day or two.

Mood swings - I've experienced this, too, but thankfully not often. The moods seem to manifest mostly when I'm talking to a customer service rep at my insurance company or online retailer or something of that nature.

There's an informative web page on the Mayo Clinic site that offers a good overview of corticosteroids, including prednisone. It's been a good starting resource for me.

Photo by Patryk Choiński

Read It: "Wall Street Journal" Article About Hepatitis C

2010-09-22T04:08:00.000-07:00

I'm one of many people with Hepatitis C who can't determine how I contracted the virus. A Wall Street Journal article, "Health Danger of Parties Past," published Sept. 20, 2010, speculates that "some former party animals may be carrying a harmful reminder of their youth and not know it." The "reminder" is Hep C.

The article describes circumstances - some innocent, some less so - under which people might have been exposed to virus-tainted blood.

People who used intravenous drugs, snorted cocaine with a shared straw, or had an unsterile tattoo or body piercing could be infected with hepatitis C and not realize it. Some people may have innocently been infected if they had a blood transfusion before 1992, when the blood supply began to be screened for the virus. Others may have contracted the virus simply by sharing a toothbrush or a razor... About 20,000 people are diagnosed with hepatitis C each year, and some two-thirds of those are middle-aged, having contracted the disease 20 or 30 years ago.

Could this explain my situation? Perhaps - 30+ years ago, while in my late teens and early 20s, I was a partier, but I avoided heavy-duty drugs. I borrowed my fair share of toothbrushes and razors, however.

Anyone looking for a quick overview of Hep C and Hep C treatments will find the article useful. And to the FDA: Please get the new treatments approved ASAP. Some of us really need them.

Three Years After My Liver Transplant, Where Can I Find Information?

2010-09-05T12:04:00.000-07:00

Jaundice. Rejection episode. Oy!

Here's the diagnosis: Liver with mixed portal and lobular inflammation, bile duct damage, parenchymal collapse, endotheliitis, steatosis, cholestasis
I won't bother to add the detailed "Comment" because it will only further confuse us all. A few days ago I received a copy of the pathology report on the liver biopsy I had last Monday. I'm no doctor, but usually I can find definitions for the terms I don't know and then cobble together some glimmer of understanding. We'll know more when I have bloodwork done Tuesday.

I continue to have trouble finding information about transplant-related illness and complications that crop up more than a year or so after liver transplantation. Statistics about one-, three- and five-year survival rates are readily available, but not much else. I'm determined to continue to search and share. Please leave a comment if you have experiences or knowledge to lend to the rest of us.

Photo by John De Boer

Sorting it Out

2010-09-01T14:39:00.000-07:00

We've entered new and mysterious territory. Preliminary results from Monday's biopsy lead my docs to believe that I'm having a rejection episode. That said, there was a great deal of inflamation and they are waiting for the detailed report they'll receive tomorrow to know better what's happening.

Jaundice is most definitely at play. My eyes seemed a bit clearer Monday and yesterday, but are very yellow again today. A quick liver panel done Monday showed my bilirubin had increased to 11.8 - quite a jump from 7.8 last Thursday.

Current protocol: Steroids. Visiting nurse administered them via IV yesterday and today. Tomorrow I switch to pills. Also hoping for more feedback tomorrow based on detailed lab results.

I'll post more as I learn more. I can't find anything on this topic online, at least as it relates to a timetable this far after transplantation. If anyone else needs the info I hope to help them find it here.

Photo from Cleveland Clinic Journal of Medicine, October 2009

Deja Vu, The Bad Kind

2010-08-28T22:18:00.000-07:00

Jaundice. I have it again. Yellow eyes and intensely yellow urine. These symptoms correlate with the unbelievably bad results of the blood tests that were drawn Thursday. AST is 1512 (normal range is 0-40). ALT (also 0-40) is 812. Total bilirubin (0-1.2) is 7.8.

This bucket of bad news elicited an "Oh, my God!" and a "What the f*#@!," then quickly transitioned into tears. Jaundice is something you get BEFORE your transplant, not almost four years afterward. I'm especially unnerved by this turn of events - of all the challenges, issues and health problems I've juggled since my transplant, this is the first time I'm dealing with a condition I had before it. Does this mean my new liver is toast?

I'm more worried than I've been in ages. Monday I'm having a liver biopsy (my second in 10 weeks). After that we'll learn more and deal with it then.

God, thank you for giving me time to get my son settled into his freshman year of college before having this fall into my lap. Dealing with both at once might have pushed me over the edge. Oh - and God, please help me find some grace and peace of mind. Amen.

Photo by Kenn W. Kiser, morgueFile.com

I'm Not Exaggerating - I'm Really Sick!

2010-08-03T10:48:00.000-07:00

EUREKA! Someone has put into words some of the feelings I've struggled with for the past four years.

In an article titled "Words that Wound, Words that Heal," Lucinda K. Porter, RN describes how frustrating it can be to have people say, "But you look so good!" when talking to someone suffering from a chronic illness. Whether the statement is honest or not, it can spark an unintended, negative reaction from the recipient.

In the Healthwise feature from the August 2010 HCV Advocate Newsletter, Porter described her personal experience on the matter:

These comments are well-intended, but simultaneously invalidating. I recall late in my [Hepatitis C] treatment, someone saying to me, “You don’t look sick.” My hair was thinning, my fingernails ghastly, and I had a nasty, visible rash. I was nauseous, depressed and irritable. It took every ounce of restraint not to say, “And you don’t look stupid or careless.”
My sentiments exactly. I continue to feel unwell even today, nearly four years after my transplant, which many people don't comprehend - and a comment of "... but you don't look sick," to my ears, is synonymous with "Oh, you must be making this up." The biggest factor at play isn't what they say, but how I receive it - I can't believe I'm still having so many health issues, I should be able to "suck it up," I've become a terrible wife and mother.

Porter offers some sage advice on how to communicate with people who are ill. She includes recommendations from Susan Milstrey Wells, author of A Delicate Balance: Living Successfully with Chronic Illness:

If someone says you look great when you’ve admitted feeling awful, Milstrey says, “Looking good while feeling bad takes talent!” and she proposes simply saying thank you. If they express that you look far too good to be feeling sick, then Milstrey suggests, “Yes, it’s even hard for me to understand how I can feel so bad when I look so good.”

The other side of this equation is how we talk to others when they are ill. It would be simple if we could speak to others as we would want them to speak to us, but we are all so different. Let’s start with what not to do:

Don’t judge – Even if you think the person is exaggerating, remain compassionate.

Don’t tell them about a worse experience – You may think it helpful to tell someone who is struggling through HCV treatment about how you scaled Mt. Everest without oxygen during your treatment, but it may make them feel inadequate and hopeless. Keep your experiences to yourself unless you think they will help.

Don’t tell them how to feel – “Get over it, you’ll be fine” is the last thing we want to hear when we are ill.

Don’t over-sympathize – Pity doesn’t help and it is demeaning.

Here’s what you can do instead:

Listen – Sometimes we communicate far more with sincere, attentive listening, than we do with words.

Offer support – You can give on-the-spot support, such as “I don’t want to pry, but if there is something going on and you want to talk about it, I’m happy to listen” or offer help, such as, “Is there anything I can do?” Don’t offer to help if you aren’t prepared to follow through with a “yes” or a firm, “I’m not able to do that, but I can do such-and-such.”

Relate – If you had similar experiences, and your intention is solely to show empathy, then it is fine to relate your experiences, as long as you aren’t trying to show one-upmanship.

Great advice for us all. And I'm going to add one final bit of counsel: Be sincere. I can tell if you aren't and that hurts most of all.

Photo by Jon Wisbey

Ethics in Transplantation: Deciding Who Gets the Next Available Organ

2010-07-27T09:05:00.000-07:00

When it comes to liver allocation for transplant patients on the waiting list, should factors other than MELD scores be considered? I've often considered this topic, which popped up again this morning when I read about man in New York who is suspected of killing his wife yet received an emergency liver transplant ahead of 2,000+ other people on New York's waiting list.

Turns out the guy needed the transplant because he consumed rat poisin in a botched suicide attempt and the poison ruined his liver.

Was this fair? I don't know. As I've stated before, I'm glad I don't make these decisions.

Photo by Sigurd Decroos

Researchers Look at Metabolic Syndrome after Liver Transplant

2010-07-25T20:53:00.000-07:00

In a 2009 issue of Liver Transplantation, researchers found that liver transplant recipients were three times more likely to develop metabolic syndrome than the general population. The study stated:

Metabolic syndrome is an "epidemic waiting to happen" among liver transplant recipients, largely as a result of their increasing likelihood of survival ...
An article on www.medpagetoday.com provides more detail about the study and recommendations for reducing chances that liver transplant recipients will develop metabolic syndrome.

If you've had or are waiting for a liver transplant, take time to read this article. This information is important. I'm living it now and trust me, it's a challenge.

I am the Ringmaster

2010-07-24T18:06:00.000-07:00

Oh, for crying out loud! I KNOW I need to be my own healthcare advocate, so shame on me for letting this happen. Live and learn ...

In my last post I described my recent flurry of doctor visits - four doctors in one week - and each made changes to my medications. These doctors know about each other and sometimes share my lab results, but that's where the collaboration ends. Fair enough: Most healthcare services are delivered this way and it's up to patients to play ringmaster.

Alas, I forgot this important lesson two days ago when I began taking the four new pills, vitamin E and two new types of insulin my doctors prescribed (these were added to the five pills and multivitamin I already take). Day one - bad headache and fatigue, which I chalked up to being overwhelmed by the changes, and little appetite. Day two - headache continues, little appetite, don't feel great but doing OK until about 5 pm, when I threw up. Hmmm. Threw up again at 10 and four more times last night. Now I'm worried about taking insulin when I haven't eaten much, especially since what I ate didn't stay down anyway.

I've been a bad ringmaster. All these med changes are wreaking havoc on my body (starting five new meds at one time wasn't such a great idea, I'm thinking). It's an experiment without any controls. My primary care physician would have been the most likely person to view this from a big picture perspective, but I saw her a week ago and most of the changes occurred after that visit. Two of the medications have side effects that can include "gastric distress," and I sincerely wish I had started them separately. Ah, such is hindsight.

This morning I woke up and, good news! no headache. I ate a scrambled egg and kept it down. But before putting a pill in my mouth I called my transplant center to speak to the person on call and, as luck would have it, my coordinator answered. She had me discontinue one of the pills (a gastric distress-causing med) and called in a prescription for nausea. Even without the nausea med, the vomiting has stopped. However, I now have diarrhea. Oh, fabulous.

Tonight I'm stopping the other gastric distress-causing pill and will see what happens. Tomorrow is my body's day to reach equilibrium; Monday I can start a smaller dose of one of the meds and, in a controlled manner, see if I can tolerate it and later in the week, I'll try the second one.

Note to self: I must pay attention. I'm the ringmaster; the lion tamer, if you will. It's up to me to bring order to the chaos.

Top photo by Claudia Meyer

Bottom photo courtesy of U.S. Library of Congress

Overload

2010-07-21T19:21:00.000-07:00

I'm EXHAUSTED!

I've been to five doctor appointments in the past week (one for my son, the others for me) and the deluge of information has exceeded the capacity of my brain. My personal health situation/treatment has undergone some significant shifts: I have pages of notes to review (so I don't forget anything) and lots of new meds to take (oh, and did I mention the possible new side effects? gastro distress, of course).

It's all a bit overwhelming tonight. Thankfully, it's much quieter from here (at least in the short run). A visit to the vampires tomorrow (back to the lab - sigh - with weekly lab visits for a while), a dental check next week and perhaps visit to the eye doc. With these in hand, it's simple weekly monitoring (I hope) and "tweaks" to meds (I hope).

Excuse me for now - I need a nap.

Photo by Keith Syvinski

The Verdict: I Have Metabolic Syndrome

2010-07-18T11:15:00.000-07:00

After reviewing my last set of lab results (8 tubes of blood - a personal record!) and considering the report from my recent biopsy, the concensus is that I have metabolic syndrome.

According to the National Institutes for Health,

Metabolic syndrome is the name for a group of risk factors linked to overweight and obesity. These risk factors increase your chance of having heart disease and other health problems, such as diabetes and stroke.

The five conditions described below are metabolic risk factors. You can develop any one of these risk factors by itself, but they tend to occur together. Metabolic syndrome is diagnosed if you have at least three of these metabolic risk factors.

A large waistline. This also is called abdominal obesity or "having an apple shape." Excess fat in the abdominal area is a greater risk factor for heart disease than excess fat in other parts of the body, such as on the hips.

A higher than normal triglyceride level (or you're on medicine to treat high triglycerides). Triglycerides are a type of fat found in the blood.

A lower than normal HDL cholesterol level (or you're on medicine to treat low HDL cholesterol). HDL is sometimes called "good" cholesterol because it helps remove cholesterol from your arteries. A low HDL cholesterol level raises your risk of heart disease.

Higher than normal blood pressure (or you're on medicine to treat high blood pressure). Blood pressure is the force of blood pushing against the walls of your arteries as your heart pumps out blood. If this pressure rises and stays high over time, it can damage your heart and lead to plaque buildup.

Higher than normal fasting blood sugar (or you're on medicine to treat high blood sugar). Mildly high blood sugar may be an early sign of diabetes.

Hmmm. I never did have a small waistline, even during my young skinny days, but I wouldn't quite describe myself as apple-shaped. Triglycerides and cholesterol have historically been good, too. But I've had to take blood pressures meds since my transplant. Also since then I've developed diabetes and take insulin injections twice a day.

Metabolic syndrome caused the significant build-up of fat in my liver that was detected in last month's biopsy, which is a key reason my liver function tests are showing poor results now. So here's what it's going to take to improve this situation:

* Lose weight (I've lost 7 pounds since April - off to a good start!)

* Control blood sugar better (I'm seeing my endocrinologist next week)

* Increase thyroid medication; TSH level is in range, but needs to be lower

I'm taking more meds, too - vitamin E, folic acid, higher dose of magnesium. I also may add another med after I see the endocrinologist next week.

What does all this mean for the Hep C treatment I'm currently on? I'll find out Tuesday when I visit my treatment coordinator. Apparently, the team at my transplant center has debated whether I should stay on or discontinue treatment, or even switch to a different type of Interferon.

I'll post an update after that appointment - and share some info I discovered about Metabolic Syndrome after liver transplant.

Photo by Jason Antony

Same Ol', Same Ol'

2010-07-01T05:56:00.000-07:00

Well, there's good news and there's bad news. This was the lead-in during the follow-up call after my liver biopsy.

The good news: The fibrosis in my liver has remained steady and is the same as my most recent prior biopsy, which was done in November 2009. The even better news is that the degree of inflamation has decreased on its scale, from 7 to 3.

And then there's the other news: There was 80 percent fat in the tissue sample. I don't know exactly what this measurement means, but 80 percent fat sounds bad no matter how it's explained.

As far as my liver is concerned, this is the same ol', same ol'. The biopsy results just raised more questions. If my liver is less inflamed than it was eight months ago, why are my liver enzymes elevated? And how in the world can there be 80 percent fat in my liver. In the biopsy I had in February 2009, there was 30 percent fat - and that was bad. But that November it was 10 percent. So in the past eight months, my liver is less inflamed but the percentage of fat went from 10 to 80 percent? Huh?

Fat in the liver can be an indication of fatty liver disease and/or metabolic syndrome, which contribute to poor liver health (among other things). Gotta get this sorted out. More blood work next week, with new tests to measure I'm-not-certain-what. Yep, it's more of the same thing. I'm hoping for some answers - fingers crossed!

Photo by Rose Ann

Liver Numbers Continue to Rise; Next Stop - Another Liver Biopsy

2010-06-08T14:07:00.001-07:00

Yesterday's lab work results weren't so great. Liver enzymes, GGT and alkaline phosphate rose again. A liver biopsy is the next step in trying to sort out what's happening. So next week I'm off to my transplant center for what has become a familiar routine. And this rollercoaster ride continues...

Photo by clix (Brazil)

Still Riding the Hep C Rollercoaster

2010-05-29T01:28:00.000-07:00

In May 2006 I learned that Hep C had damaged my liver so badly that I needed a liver transplant. Thus began my rollercoaster ride, which begat this blog. And that ride continues ...

In January I started treatment on pegylated Interferon and Ribasphere and last month, at the 12-week mark, we learned the treatment hadn't cleared the Hep C virus from my system. In other words, it didn't work. It was no surprise to us: After all, the treatment didn't work 2 1/2 years ago (seven months after my transplant) when I was placed on it.

But there was a bright spot in the results - my liver enzymes, Alkaline and GGT all had dropped significantly and this was news to celebrate. In spite of research indicating no benefit from staying on treatment for "maintenance therapy," we decided I would continue on it because of the improved impact on my bloodwork. However ...

My last three sets of blood test results show a steady rise in liver functions. AST and ALT are closing in on 200 and GGT is 519! What the hell?!

This is virgin territory. It never occurred to me that the numbers might increase while I'm on treatment. Candidly, I'm not comfortable in this realm of the unknown.

Next step: Repeat basic labs in just over a week, along with PT-INR and Hep C viral load count. Depending on what those results show, my doc may order a liver biopsy sooner than later. And I'll keep riding the rollercoaster, hanging on for dear life.

Photo by Lars Sundstrom

Saving Money on Meds

2010-05-06T12:55:00.000-07:00

Yesterday I received the best possible kind of mail - a card certifying my enrollment in a program that will save me up to $200 off the cost of my immunosuppressant. When you consider that my copayment for this med just increased from $360 to $600 per year, the card is like manna from heaven.

My sincere thanks to the pharmacy service rep who mentioned the Prograf Value Card program and enrolled me in it. I'm grateful for any savings we can gain, given that this is but one of the medications I take daily. I'm not familiar with the eligibility requirements for the program but found the online website to enroll.

Post-transplant medication costs are significant. We have good medical insurance but our out-of-pocket copayments exceed $1,700 per year. That doesn't include my cost for the pegylated interferon and Ribasphere I currently take, which an additional $500 per year (a drop in the bucket compared to the many thousands of dollars these meds cost at "retail").

If you take Prograf and could use assistance paying for it, perhaps this can help you. Good luck!

Photo by Will Thomas

The Miraculous Merits of Magic Mouthwash

2010-04-25T13:44:00.000-07:00

One of the ongoing side effects I’ve experienced on my Hep C treatment is sensitivity in my mouth. The area under my tongue, the inside of my lips and even spots on my tongue are uneven – not smooth like they should be – and feel as though a sore could break out any time. Some areas have been painful and I’ve had occasions where my teeth ache and it hurts to bite down, but not in the “I need a root canal” sense.

At the most recent visit to my primary care doctor I described the discomfort and with a stroke of her pen, Dr. M. prescribed relief for this annoying side effect that’s plagued me for more than two months.

The miracle: Magic Mouthwash. This stuff is amazing. Swish just a bit of it in your mouth and it immediately numbs and soothes.

Magic Mouthwash is often given to people with oral ulcers, especially cancer patients undergoing radiation or chemotherapy. I’d never heard of it until a couple of years ago and forgot about it until the doc wrote my prescription.

Please note: While the mouthwash has a cute, consumer-friendly name, it is mixed by a pharmacist according to the prescribing doctor’s specifications. It is not available without a prescription.I’m always searching for ways to ease the discomfort or challenges caused by my Hep C, transplant, medication, whatever. In my experience, people sharing their experiences with others can be as beneficial as a visit to the doctor.

If you’ve experienced similar issues or other problems, please leave a comment and describe how you dealt with it. I appreciate any and all input.

Photo by Mathias Alvebring

Two Months into Treatment and the News is Still Good...

2010-03-18T09:47:00.000-07:00

Note: This post was published March 31, 2010

I had blood work done earlier this week and my transplant coordinator called me with good news - my liver enzymes have really dropped. From their highs of nearly 500 and 600, they are now in the 80s and just over 100. I believe it's been, maybe, two years since they've been this low.

Of course, given the craziness of Hep C, these lower numbers don't mean that my liver isn't inflamed or becoming more damaged (although higher enzyme levels indicate the opposite). Huh? This isn't logical at all. Nonetheless, it MUST benefit my liver in some fashion and I'm taking it at face value.

This progress makes it easy to manage the inconveniences and side effects of treatment. My list of treatment-related complaints is small and I know how fortunate I am to tolerate it this well. Fatigue is still the big issue for me... and not far behind is "brain fog." (The combination of menopause and the meds leaves me with the cognitive function of a pre-teen with ADD; if only I could remember - and finish - one thing.)

Over the weekend I learned about "Riba rash" - apparently, Ribavirin can cause a host of skin problems including red, itchy rashes that sometimes creates blisters. A small patch popped up on my torso, but it looks like it might fade and disappear. (FYI - I used Eucerin Calming Cream and the itching.stopped.)

My next visit to the lab (April 12) is the BIG ONE. My viral load will be measured and the following week I'll visit my transplant center for a discussion about the results and what's next.

My Hep C Treatment - Four Weeks and So Far, So Good

2010-02-21T16:16:00.000-08:00

Last week I marked four weeks of pegylated Interferon and Ribavirin treatment, and visited my treatment coordinator to touch base about how it's going so far. Fortunately, the new is good.

I'm tolerating the meds well. I'm tired, but generally speaking I'm handling the fatigue and other minor side effects pretty successfully. Biggest challenges - nagging headache (off and on), yeast infection, the inside of my mouth feels unusual (as though a sore could pop up anytime) and fatigue. When I need a nap, I need one NOW.

Considering the spectrum of possible side effects, I'm doing great. It's early in treatment and something else may occur, but I'm taking it a day at a time and my transplant team and I are pleased - and I'm very grateful. For now, I only need labs drawn every other week and won't have to visit my transplant center again until mid-April.

Sometime over the next few days I should get feedback about the viral load. After four weeks, a big drop should occur - say prayers, cross fingers. I'll be antsy and curious until that info arrives.

A huge thanks to the people who shared their stories. Hep C is tough and the treatment can be brutal. Docs at my transplant center SWEAR that new meds will be available next year. We can't wait!

Photo by Thiago Felipe Festa

Deja Vu: I'm Back on Pegylated Interferon and Ribavirin

2010-02-07T10:56:00.001-08:00

Hepatitis C is like your shadow - this wicked, stubborn virus is always present, liver transplant or not, dogging at your heals, never really letting up. When docs determined in Nov. 2009 that Hep C was causing my elevated liver enzymes, we all decided that trying treatment again was my best option (my choices were to either try treatment or wait, and I'm not one to wait around). I started Jan. 19 and thus began the journey to discover a new phase of "normal."

When I was treated in 2007 I was still recovering from my transplant and post-transplant complications, so it was tough to tell how the meds affected me. This time, in a more controlled environment (so to speak), it's easier to distinguish the side effects. I'm pretty lucky, in that I haven't experienced anything extreme. My side effects have included chills (no fever, but it feels like my body temperature is awry - my forehead is cool but cheeks and neck are really hot), intermittent headaches, yeast infection and most of all, fatigue. So far, not too bad. I start feeling the impact about 12 hours after my shot.

I've never spoken with anyone in my shoes, who is undergoing treatment post-transplant. If you've been in these shoes, please comment and tell me about your experiences. Or even if you've been treated and haven't had a transplant, I'm interested in what you went through. Do the side effects become worse over time, as the meds build up in your body? Did you lose hair (this is a concern for me). Do you have planning strategies you can share - I have a husband and two teenagers and just keeping us fed is a challenge sometimes.

Photo by Vangelis Thomaidis

Another Milestone: My 3rd Liver Birthday!

2009-12-04T04:04:00.000-08:00

Yesterday, Dec. 3, marked the third anniversary of my liver transplant. What a wonderful occasion! There have been plenty of times when I wondered if I'd make it this far, so celebrating the day is a blessing.

I have much to be thankful for this time of year. These days, I take NOTHING for granted. As they say, life isn't a dress rehearsal.

Carpe diem, y'all.

Photo by Zsuzsanna Kilian

The Best Bad News I Ever Received

2009-11-26T22:14:00.000-08:00

What a relief!

My recent liver biopsy revealed a bit more fibrosis and more inflamation, due to the Hepatitis C. But that was all. I was expecting FAR worse results... and as it turns out, so was my transplant coordinator. We exhaled audibly and collectively, and had many things to be grateful for this Thanksgiving.

For me and my doc, the objective continues to be to keep this liver as healthy as possible while we await a cure. So two days ago my husband and I returned to the transplant center and met with the woman who oversees liver treatment for Hep C, and after thoughtful discussion, we agreed that I will try Interferon/Ribavirin treatment again. When I took the meds two years ago, starting just eight months after my transplant, it didn't "clear the virus" (I continued to have a measurable Hep C viral load). While the chance of success this time is low, it's the only alternative available to me.

I'll be on treatment for 12 weeks, the length of time during which my viral load should either drop SIGNIFICANTLY or, essentially, be undetectable. If the pegulated Interferon treatment doesn't work, I can try a more aggressive treatment that requires Interferon injections daily (instead of weekly, as in the pegulated protocol). I'm going to do some homework on these options and I'll post what I learn, so watch for more information.

Next year could be fairly rough, because the pegulated Interferon has many side effects (flu-like symptoms): the more aggressive treatment stands to be pretty miserable. But I'm ready to fight the good fight. (Please remind me of this when I moan and wail five months from now.)

January 19 is the target date, when I take my first injection. Fingers crossed, knees bent in prayer. Please, God, let this medicine protect my liver.

The miracle of modern medicine is just one of the many blessings I'm counting this Thanksgiving. May you and yours also enjoy blessings and abundance.

Photo by Sanja Gjenero

Curiouser and Curiouser

2009-11-14T06:00:00.000-08:00

Much like Alice, I find myself puzzled these days. Alice's strange experience was her travel through Wonderland. For me, it's the liver transplant journey. It's been confusing for both of us.

A quick recap - Two months ago, my labs showed very elevated liver enzymes. Last month they dropped a bit, but were still in the 400s and 500s - far over the high end of the normal range, which is 40. Then a couple of weeks ago I noticed a symptom that I hadn't had before, even prior to my transplant - the color of my stool was light yellowish-gray, an indication that there are bile problems. I had labs repeated and the results continued to be abnormal, so yesterday I had a liver biopsy.

In the past, I would have asked my doctor and liver coordinator a series of contingency questions: "What if the fibrosis is worse? Would you want to A, B or C?" or "If the fibrosis stage hasn't changed, would you need to run more tests to determine why things are out of range?" Finally, almost three years after my transplant, I realize that it's useless to try to predict what's going to happen until the results have been reviewed by my doctor and her colleagues. Too many variables are at play and we could spend hours trying to anticipate what will happen.

So once again we wait and by the end of next week, we should have news and a gameplan. In the meantime, I'll be spending a little time online searching for information about what these symptoms might mean. It's going to be an interesting week, to be certain.

The Waiting is the Hardest Part

2009-10-12T04:06:00.000-07:00

Tom Petty was right - waiting is hard.

Friday I had labs drawn, a follow-up to last month's labs wherein I set a record-high ALT and AST. Blood was drawn for transplant center's standing lab order and a handful of other tests, as well as a few tests for my local internist; altogether, the tech drew about 10 tubes (no exaggeration). Additionally, I had to bring in 24-hour urine collection (THAT was fun) which will be used to gauge kidney function - an important factor to check for liver transplant patients because many experience kidney damage after the transplant.

Now, I wait. I know many of the test results will be available today, including the ALT and AST. I'm hoping I can hold on until tomorrow to call and request a copy of whatever results are currently available; sometimes, though, I get "squirrely" and can't wait.

Today I'll channel some patience and keep myself busy. As Petty wrote and sang in the song, "Don't let it kill you baby, don't let it get to you." And hey, this isn't nearly as hard as waiting for the call about my liver transplant, right?

Photo by Pedro SimÃ£o; Song and lyrics by Tom Petty

How Will You Know if Liver Damage Becomes Severe?

2009-09-30T22:55:00.000-07:00

When doctors told me that I needed a liver transplant, I was shocked - not just surprised, shocked. Eighteen years prior I had been diagnosed with Hepatitis C: Maybe five years before my transplant diagnosis a GI doc told me that my liver showed some cirrhosis. I still didn't give the matter enough heed. After all, I felt pretty good - a little tired sometimes, but I wasn't jaundiced (the only real symptom of liver disease I knew about) and assumed that everything was OK. For crying out loud, I'd gone to Europe with my family just two months prior to my diagnosis - does that sound like someone who needs a transplant?

Truth is, I was unaware of the symptoms of advanced cirrhosis and a couple of weeks after returning from our trip I began having problems with edema (extreme swelling in my ankles and feet) that wouldn't go away. When we couldn't get it under control, my primary care doctor put me in the hospital to run a battery of tests and that's when I got my end-stage liver disease diagnosis and the transplant discussion ensued.

Would I have done things differently then if I knew what I know now. Oh, God, yes! It's my hope that everyone with liver disease knows the symptoms of end-stage liver disease and can be a better self-advocate. In addition, it can help patients anticipate some of the conditions they may encounter so they can be better prepared than I was.

HCV Advocate, an EXCELLENT resource for anyone with Hepatitis C, published in its October newsletter a list of key symptoms that accompany decompensated cirrhosis (the liver is severely scarred and damaged). They include:

Ascites

Edema

Varices

Bleeding and bruising

Gynecomastia

Encephalopathy

Infections

Pruritis (itching)

Jaundice

Kidney disorders

Liver cancer

Menstrual irregularities

Changes in nails

Portal hypertension

Nevi (spider angioma)

Sepsis

Malnutrition and weight loss

While this list is long, I experienced other symptoms, too - including the extreme and painful cramps in my hands, feet, calves and thighs. So this list may not be exhaustive, but it's the most inclusive one I've come across (and it offers a bit of detail about each symptom, too, which is quite helpful).

I encourage anyone with Hepatitis C to visit www.hcvadvocate.org and sign up for its regular newsletter. Some information is a bit technical but I've become a better self-advocate my learning the medical terms and reading the articles. I'm confident you'll find it useful.

Impassioned, Death-bed Plea Generates 20,000 New Organ Donors in Ireland, England

2009-09-29T07:32:00.000-07:00

Famed Irish author and Emmy Award-winning scriptwriter Frank Deasy died September 17th, but not before speaking publicly about his illness and need for a liver transplant, which spurred 20,000 people to join organ donation registries in Ireland and England.

Deasy, who had a liver tumor, had been hospitalized in Edinburgh, Scotland while awaiting transplant surgery. A liver became available September 16th and Deasy's transplant got underway, but surgeons had trouble stopping his bleeding during the overnight operation (uncontrolled bleeding is a major complication for patients with end-stage liver disease) and, sadly, he died.

The weekend prior to his death Deasy wrote a first-hand account of his experienced that was published in The Observer under the headline, "My Wait for a Liver Transplant on Britain's Invisible Death Row: Frank Deasy Explains How a System in Crisis Could Be Transformed if More of us Registered for Organ Donation." He also spoke about his illness on Irish National Radio, prompting Irish Health Minister Mary Harney to praise him "for speaking out publicly about his illness and the importance of organ donation."

Hats off to Mr. Deasy for his willingness to talk openly about his need for transplant surgery and for encouraging people to be organ donors. Cheers to the readers and listeners who heeded his call and joined the rolls. Even with the myriad accolades Deasy won during his lifetime, his final public words may be the ones with the greatest lasting impact.

Photo of Frank and Marie Deasy, www.independent.ie

The Next "Thing" is Here: Cataracts

2009-09-28T14:46:00.000-07:00

Yeah, just picture me: Knee-high hose with orthopedic old lady shoes, gray cardigan buttoned wrong and - drumroll - those square disposable sunglasses covering my eyes plus nearly one-third of my face. Pretty!

But seriously... I just returned from an appointment with my opthamologist, whom I must see annually now due to transplant medication and diabetes (one of my post-transplant annual doctor visits). In the 18 months since I last saw her my vision overall is maybe a little improved (!) but I have a cataract developing in my right eye. Oh, fabulous!

The doc saw nothing at my last appointment, so this is a new condition. I brought home a brochure and will read up on cataracts, about which I know virtually nothing. What I thought I knew was that cataracts usually belong to the world of the elderly and surgery is required to remove them. Sure, I turned 50 a couple of months ago and while that made me eligible for AARP, I never imagined that it made me eligible for cataracts. It's an insult, frankly.

Apparently, my "poorly controlled" diabetes is probably the culprit here. The doc said that the cataract's growth is hard to predict: It could fully cover the lens in six months or six years. But she said not to worry, telling me "You'll know when it's a problem because you'll have trouble seeing and your vision will be cloudy all the time, no matter what you do. I won't have to tell you because you'll call me complaining about it."

So, I'm off to learn about cataracts. As soon as my eyes return to normal, that is - my pupils are still quite dialated at this point. Guess I'll wait until I can take off my new sunglasses.

Photo by Jacob Power

(Hopefully) Big News Awaits at the AASLD Conference!

2009-09-25T23:27:00.000-07:00

AASLD - the American Association for the Study of Liver Diseases - holds its 60th annual conference October 30 - November 3, 2009 in Boston. Yes!

I fear that I've become geekier than ever, because I'm pretty stoked about this upcoming meeting of many of the greatest liver docs and researchers on the planet. Some of the most useful information I've dug up about hepatitis C and liver transplants has come from the conference, where a great number of research projects and studies are discussed and/or results presented.

This year, for example, Vertex Pharmaceuticals will present data from studies that evaluated telepravir, which Vertex describes as a "investigational hepatitis C virus (HCV) protease inhibitor." The hepatologists at my transplant center have been following these studies and if they're interested, so am I, particularly about results from "a pooled analysis of PROVE 1 and PROVE 2 in 'difficult-to-cure' patients" - and I fall into that category. Click here to view the entire news release about the Vertex presentations planned for the AASLD Conference.

Of course, I'm a layman and novice and none of this may pertain to me and my situation. Nonetheless, it's cause for hope and I'll be optimistic for now.

Photo by Jean Scheijen, http://www.vierdrie.nl

The Ongoing and Urgent Need for Organ Donors: Donate Your Organs and Be a Superhero!

2009-09-22T11:26:00.000-07:00

The unos.org website is a treasure trove of information about the need for and distribution of organs used transplant. I rarely visit it now, yet was a very frequent guest prior to my transplant as I tracked the number of people on the transplant waiting list at my transplant center and tried to gauge my priority versus others on the list.

Today I visited the site and sighed at the data posted front and center on the home page:

According to its real-time tally, 103,790 people are waiting for organ transplants as of 2:23 p.m. today. Year to date, as of September 18, 2009, 14,191 transplants had been performed with organs donated by 7,249 donors.

Organ donation is the ultimate gift any person could give. Given the extraordinary need for organs, every donor becomes an automatic superhero, a champion, a life-saver.

Won't you be a superhero? It's easy - visit www.organdonor.gov to learn how you can sign up. As noted on the website, "Each organ and tissue donor saves or improves the lives of as many as 50 people." What could be more super than that?

Photo by Charles Thompson

It's Official - I'm Disabled

2009-09-15T13:30:00.000-07:00

This good (?) news arrived during my "vacation from illness" and I just realized that I hadn't posted a follow-up about applying for Social Security Disability. I'm officially disabled. If I may be so bold... it saved our butts financially. My one regret is not applying sooner; however, I kept expecting that my health would improve and I'd return to work. No such luck.

Not only did we begin receiving a monthly SSD payment, but we also received a year's worth of back payments (in one lump sum) that was effective from the date I initially applied for SSD. We paid off loads of bills, bought our kids a used vehicle and fixed up some things around the house. What a blessing! I cried happy tears when I learned that I was found to be disabled and really bawled when they told me about the back payments.

The calls from creditors have ceased, we won't lose our house and we might actually find a way to send our children to college. It's a tremendous relief and I'm ever so grateful.

Photo by Jeinny Solis S.

Women's Health Issues and Liver Disease

2009-09-12T14:32:00.000-07:00

Since May 2006, when I was diagnosed with end-stage liver disease and was told I needed a transplant, I've experienced intermittent amenorrhea, which is a $20 word that means the absence of menstrual periods. I would have a period for four or five months, then nothing for seven months, and back-and-forth on the same general routine. I spoke with all my docs about it - hepatologist, internist, gynecologist - and no one had an answer and, to my disappointment, didn't investigate the matter further. I dumped my gynecologist, whose response (or lack of it) was the biggest let-down, and haven't yet replaced him because I expect to get the same reaction no matter where I turn.

I want to know WHY. Why, all of a sudden, did I stop having periods when I'd them like clockwork for years? Why did they come and go? Yes, I was in my late 40s so it could be perimenopause symptoms, but couldn't it also be something else, something related to my liver condition? Given the timing I didn't believe it was coincidental.

So I did my own research on the Internet and found one solitary abstract from a medical journal, stating that it was common for women with end-stage liver disease to experience amenorrhea, and after a liver transplant their periods would resume, on average, around five months later. Such was my experience. I shared this with my docs but none of them "took the bait."

So, today I stumbled across a blog post describing some of the presentations made at the Fall 2007 conference of the American Association for the Study of Liver Diseases. On Clinical Correlations: The NYU Internal Medicine Blog, Ponni Perumalswami, MD wrote, Another important presentation was given by Dr. Terrault who discussed the unique aspects of liver disease management in women. While the authors described a number of important observations, the most interesting were the findings that the risk of amenorrhea is increased in women with cirrhosis...

Dr. Terrault also stated that women with chronic hepatitis C have slower rates of fibrosis progression as compared to men, and that when they are treated for their disease, they are more likely to attain a sustained virologic response. All is not optimistic, though, because during their post-menopause years their HCV disease and progression to fibrosis tends to accelerate. Once these women hit the post-menopausal period, their risk of developing hepatocellular carcinoma also increases.
I need to do a bit more digging and see what I can unearth on this topic. Knowing about and understanding the impact of liver disease and cirrhosis on my menstrual cycle is IMPORTANT TO ME. Without information, I can't cope with the myriad physical symptoms and changes that I deal with on a daily basis.

With more info in hand, it might be time to start looking for a new gynecologist. My fingers are crossed.

Graphic from cdc.gov

Steve Jobs - Back at Work

2009-09-11T23:46:00.000-07:00

Earlier this week Steve Jobs appeared at an Apple Inc. product unveiling news conference, which was his first official appearance in public since a liver transplant earlier this year. In explaining his transplant surgery, Jobs said,

I have the liver of a twentysomething person who died in a car crash and who was generous enough to donate their [sic] organs.

I wouldn't be here without such generosity, so I hope all of us can be as generous and elect to be organ donors.

Liver transplants are uncommon and unlike cancer or heart disease or diabetes, which are more commonly found in the general population, liver disease and organ donation don't have the same level of awareness. So when a world renowned CEO like Jobs has a liver transplant, people notice. And they talk. And, hopefully, they sign up to become organ donors.

Glad to know you're faring well, Steve. Thanks for talking openly about your experience and urging others to become organ donors.

My Self-described "Vacation" is Over - Here are the Latest Lab Results

2009-09-10T11:43:00.000-07:00

Let's start with the good news: Most of my blood work came back looking really good. Almost everything is in range and even my blood sugar, which has been far too high for the past six weeks (in spite of oral meds and insulin) was 121. Excellent!

Then there are the liver enzymes. I've set a personal record, my friends. ALT is a whopping 690 (normal range is 0 - 40) and AST is 519 (range 0 - 40). GGT is 494 (range 0 - 60), which is the best reading I've had since last December.

I'll have labs repeated in three weeks and we'll see what that reveals. Obviously, something is awry (the doc speculates that it's part of the ongoing Hep C flare-up, yet this begs the question, How long can a flare-up last?). I'll also work on losing weight and keeping diabetes under control; hopefully, it will reduce impact of metabolic syndrome/fatty liver.

Weight and diabetes are an ongoing struggle. I asked about a magic pill to help and my transplant coordinator suggested Weight Watchers. Ugh. She's right, darn her.

And Speaking About Who Should Have a Liver Transplant...

2009-09-01T04:24:00.000-07:00

Just days ago a US District Court juddge ruled that an imprisoned inmate will not receive a liver transplant because the local hospital/transplant center determined he "was not a good transplant candidate, citing a lack of a support system, inadequate follow-up care in prison and other factors..." According to an article in the Las Vegas Review-Journal, the government was willing to pay for the procedure but couldn't find a hospital to perform the transplant.

Given my last post about priority ranking for liver transplants, let's consider this inmate's potential priority ranking. Ronald "Joey" Sellers has Hepatitis C and is in end-stage liver failure (the article didn't report his MELD score). His brother and son have offered to donate portions of their livers for a partial liver transplant, if this type of transplant is feasible. And, as noted above, payment for the transplant and first year expenses (estimated at $450,000) has been guaranteed by the US government.

Is it fair and/or reasonable that the US government would spend nearly half-a-million dollars for this life-saving surgery, given that federal prosecutors say they will "seek the death penalty against him" when he goes to trial?

Where's the logic in this - if, that is, logical considerations like expected transplant outcomes are a main factor for determining liver transplant priority?

A bit more about Mr. Sellers, who is "...accused of heading the Aryan Warriors inside Nevada prisons. Under his leadership, the gang distributed methamphetamine, sought to corrupt prison guards and assaulted fellow prisoners in racially motivated attacks that left one inmate dead, federal authorities said."

We've reached the deep end of the pool, my friends. Slogging around down here is bound to get messy - but it's far more interesting than what goes on in the safer, shallow end.

What do you think? How 'bout taxpayer outrage at spending this kind of money in this way, especially given the current health care debate. I volunteer with a woman whose brother-in-law died of liver disease because he couldn't pay for a transplant and to the best of my knowledge, he was an upstanding citizen who simply didn't have adequate (if any) health insurance. The government wouldn't pay for his transplant - but will cover Sellers'.

It's a lot to ponder before I have my first cup of coffee this morning.

Photo by Cyan Li

The Evolving Debate Over Who Gets a Liver Transplant

2009-08-31T19:38:00.000-07:00

For at least two years after my liver transplant I was so frustrated, depressed and confused about the complications and show recovery from my surgery that I never truly experienced a sense of peace or - I'm embarassed to admit - gratitude that my life had been saved. It goes without saying that my expectations were completely off-target, and my futile attempts to return to my previously "normal" life were unrealistic.

The luxury of a summer vacation from being a patient (as I think of the past few months) has lifted my spirits like nothing else has and for the first time in years, I feel like myself - optimistic, glass half-full, etc. And I'm so VERY, VERY grateful for my transplant and this extra time I'm living, enjoying my husband, children, travel and all the things that I treasure in my world.

So I gasped a bit when I read a news report about a study in the August 2009 issue of Hepatology:

According to Dr. Michael R. Lucey of the University of Wisconsin, Madison, and colleagues: "Except in patients with very low or very high Model for End-Stage Liver Disease (MELD) scores, HCV status has a significant negative impact on the survival benefit of liver transplantation..."

Hmmm. Certainly, given that a liver transplant doesn't eradicate the virus, which impacts the new liver (at different rates and to differing degrees, depending on the individual), it stands to reason that ultimate outcomes, especially over the long-term, would be worse for people with Hepatitis C.

The article continued:

In an editorial published with the study, Dr. Sumeet K. Asrani and colleagues from the Mayo Clinic College of Medicine, Rochester, Minnesota, discuss the implications of these findings if a "benefit-based transplant policy" were to be adopted in the face of an organ shortage that mandates rationing of a scarce resource.

The data, they write, suggest that "compared to patients with ALD (alcoholic liver disease) who have comparable MELD (Model for End-stage Liver Disease) score, patients with HCV (Hepatitis C virus) should be given a lower priority when their MELD is intermediate (score of 9 to 29), whereas patients with HCV who have higher MELD score should be given an even higher priority than candidates at the same MELD score with another diagnosis."

For such a benefit-based transplant policy to be implemented, Dr. Asrani and colleagues note, the transplant community "must be willing to accept this departure from the traditional thinking: because some patients with hepatitis C will experience poor outcome, they will be placed at lower priority than patients without HCV who are faced with the same (or even lower) risk of death while waiting."

Summing up, Dr. Asrani and co-authors say this study is "an important step" in the continued debate on which variables matter in predicting survival benefit of liver transplantation and whether an organ allocation system based on predicted survival benefit can be equitably implemented.

I had a MELD score of 24 prior to transplant, which puts me in the lower-priority group noted in this study. I have such mixed emotions about this matter. Who should receive priority when it comes to liver transplants? Given the surgical complications and my ongoing, costly health issues, should this liver have gone to someone else? Someone younger, or perhaps more likely to survive many years without serious health issues like mine?

I can't imagine being asked to make these God-like determinations. Let's pray that God is guiding the people who do.

Photo by Nick Cowie

To Vaccinate or Not to Vaccinate? What's My Priority Ranking for the Swine Flu Vaccine?

2009-08-23T09:51:00.000-07:00

At the beginning of the week I spoke with a secretary at my transplant center and asked about the H1N1 (Swine) flu vaccine and what arrangements I should make to be vaccinated. A logical question, right, considering that I'm immunosuppressed and must prioritize the "regular" fall flu vaccination - BUT, I don't fall into the publicized high-risk categories:

* Pregnant (oh, Hell No!)
* Young (although my teenage children fit this criteria).

Here was the secretary's response: "Your coordinator is on vacation this week and we don't really know anyway, so wait until you hear that the vaccine is approved and call us back."

Pardon me?

Talk about needing to be a self-advocate for your personal health! I can honestly say that in the three years I've been a patient at my transplant center, I don't recall one occasion when the center pro-actively contacted me about any health matters, liver or otherwise - no updates on Hep C treatment options, research on immunosuppressant medication, nothing. Sure, my internist (my "regular" doctor) handles all healthcare that doesn't directly impact my liver. But I expected that given WHO's declaration of H1N1 as a novel pandemic, transplant centers would be able to guide their patients about priority ranking (or not) for vaccinations. Right?

I'm an idealist and given to fuss about things that should be (in my opinion). Tilting at windmills? Probably. But to put it in the words of my 15-year-old daughter, "I'm just sayin'... "

Photo by Philippe Ramakers

Biomarker May Predict Success of Hep C Treatment

2009-08-17T06:17:00.000-07:00

Thank God for modern medicine and medical research.

From Reuters, August 17, 2009

CHICAGO (Reuters) - A slight difference in a person's genetic code could determine whether they respond to a grueling round of treatment for hepatitis C infection or not, U.S. researchers said on Sunday.

Tests looking for that deviation could be used to help decide which patients are most likely to benefit, they said. The finding may also explain why some racial and ethnic groups fare more poorly on standard treatments than others...

"If you look at individuals with the good response genotype, about 80 percent of them will be cured. If you look at individuals with the poor-response genotype, about 30 percent of them will be cured," [said genetics researcher David Goldstein of Duke University, who led the study]. "That is just a huge, huge difference."

[The study] was funded by Schering-Plough, maker of one of two standard hepatitis C regimens -- a combination of Pegintron and the antiviral ribavirin.

Great research like this leaves pragmatic me with questions about the practical application of these findings - Will patients be screened for this biomarker prior to treatment? How much will the screening cost and when will it become a standard part of the process?

What do you think?

About My Extended Break...

2009-08-08T20:59:00.000-07:00

When I last posted on this blog, well over a month ago, I thought I was ready to resume blogging after a little break. I was wrong. And I disappeared again.

Let me tell you what has been happening...

It's taken me longer to shake the blues and recharge my batteries, so to speak. My latest bout of liver mysteries, which started at the beginning of the year, had become too stressful and I wasn't finding answers to my questions. I called my transplant coordinator in tears, having failed to lose weight and exercise as I had been directed, and begged off blood work until I could pull myself together.

So I've enjoyed a few months without tests or questions or even blogging, and ignorance has been bliss. I describe this as my "vacation from being sick" and it has been wonderful. I visited New York City with my daughter, traveled to Michigan to attend a wedding and went on several college visits with my son, who starts his senior year of high school in a few weeks. I rested, did some long-overdue home decorating and filed several years' worth of papers.

And now it's time to be a liver transplant patient with Hep C again. I have enough reserved energy to be a bit hopeful and have had enough distance to view the process with a bit of perspective. Most of all, I'm ready to resume blogging. My resolve to share my experience with others on this path has never wavered; now it's time to sit at my keyboard and resume this work.

Steve Jobs Gets a Liver Transplant

2009-06-22T09:36:00.000-07:00

Best wishes to Steve Jobs for the success of his (still rumored) liver transplant two months ago. From what I've read, his need for a transplant was uncommon and due to complications or a condition caused by pancreatic cancer.

Whenever someone of Jobs' celebrity has transplant surgery, a buzz is created that I hope makes people stop and think about transplants and the urgent need for organ donors. Akin to turning lemons into lemonade, if you will.

P.S. - I've taken a break from my blog because, well, the task of being a transplant patient with ongoing challenges (physical, financial, emotional, you name it) has been exhausting. I have rested and now I'm back in the saddle.

No Surprise - Gotta Complete More Government Forms for Social Security!

2009-05-02T16:30:00.000-07:00

I received the mail that I'd been told to expect - it was two questionnaires for me to fill out. One asked for detail about any pain I was experiencing; the other asked for detailed responses about my condition and its impact on my daily activities. My husband was also asked to complete a questionnaire, which addressed his observations about my illness and its impact on day-to-day life, activities, etc.

More multi-paged forms requesting details. Ugh. Given how long it took me to complete the online forms, I thought surely that volume of data would be sufficient. It's frustrating and a challenge to spell out the details these days, given my (lack of) memory.

During this time, I decided to be proactive about making sure Social Security reps received the records they needed from my doctor and the hospitals I had stayed in (my transplant center and the local hospital where, in May 2006, I had my gallbladder removed and received the news about needing a liver transplant). I faxed a request to my local doctor's office, then made personal phone calls to records departments at both hospitals to ensure they had received the request and were responding. Cynic that I am, I was pleasantly surprised to learn that all had been received and records were being mailed. Yeah!

Actually, I was the last one to complete and submit forms. When I discovered that everything else had been submitted, I expedited completion of my questionnaires and faxed them in. I was told that the person/physician who reviews applications and substantiation materials would be able to make a determination within 24 hours of receiving all documents (imagine! the government making a 24-hour turnaround!), so I was highly motivated.

The documents were faxed April 24; I was again told to wait for a letter. Two days ago, unable to hover over the mailbox any longer, I called to check about how things were progressing and learned that my file had been sent to a quality control-type department where files are reviewed to be certain they are accurate. Arrrgghhhhhh! So close, so close...

I've been told to look for mail in May, so once again I wait.

Social Security Disability Benefits and Liver Transplant Patients: An Update on My Application

2009-05-02T07:43:00.001-07:00

Holy smokes! It's been a month since my last post and there is much to tell. I'll start with my disability application - I've learned a lot.

Even before the mail arrived, I received a call one morning from a Social Security respresentative telling me that she had received my file the previous day and that because of my illness/condition (liver transplant), review of my file was being expedited. Huh? Awesome!

It's Here: The Skin Cancer My Doc Told Us About

2009-04-04T17:19:00.000-07:00

Nearly two weeks ago I went to the dermatologist about a small spot on the side of my face that, after a month or so, wouldn't heal. It's very small but to be safe, I decided to have it checked. The nurse practitioner scraped off some cells, said she didn't think it looked threatening but sent it to the lab anyway. Ten days later I got the call: It's a squamous cell carcinoma (SCC) and while it's not malignant, the dermatologist must remove it to avoid future problems.

Although I didn't expect the diagnosis, it wasn't a shock. At our first consultation with the transplant surgeon, one of the things we learned was that transplant patients are substantially more likely to develop skin cancer, primarily because of immunosuppression. A chart from the Department of Dermatology on the University of California, San Francisco School of Medicine website shows that organ transplant recipients are 65 times more likely to develop SCC, and 100 times more likely than the general population to have non-malignant skin cancer.

Considering that I grew up in the South, around swimming pools and beaches in the days when there was nothing better than sun-kissed blonde hair and a deep brown tan (or for me, a red-hot sunburn), I expected to become good friends with a dermatologist when I got older and it became time to pay the price for my sun-worshipping ways. My transplant and immunosuppressants are like gasoline on a fire.

I've come to learn that skin cancer isn't the only form of cancer that affects all transplant recipients and liver transplant patients, in particular. A study published in the October 2008 issue of Liver Transplantation reported that liver transplant patients are more likely than the general population to have a higher incidence of all types of cancer. According to the report, "The most common cancer types in our cohort were lymphoma and skin cancer." It continued, "Based on our data, one out of six liver transplant patients is estimated to develop some form of cancer by 20 years after transplantation."

And so it goes. I'll blog about this experience, too - I've never had any skin cancer incidents before and it's all new to me. If you have advice or suggestions, please leave a comment. Apparently, there will two levels of stitches, which seems like overkill for such a tiny spot (think: zit).

Photo by Sanja Gjenero

Applying for Disability Benefits Online

2009-03-31T08:20:00.000-07:00

I was able to submit my Social Security Disability application and disability/work history report online, which is a service the Social Security Administration (SSA) recently instituted. Applying online is expected to speed the review process - I've been told it can take three to five months! ouch!! - so my fingers are crossed.

The application process wasn't difficult, but it was quite time-consuming (I spent at least two hours completing the report). It asked for names and complete contact info for all of my doctors, lists of tests that have been conducted, dates (this was challenging because I didn't document my transplant experience in detail), symptoms and more. A word of advice: If you're going through this process, keep a record of every doc, test, procedure, result, you name it. I kept copies of reports and other paperwork, but additional detail would have made it much easier to complete the report.

Another word of advice: You must complete TWO SEPARATE DOCUMENTS - the Adult Disability and Work History report and Disability Benefit Application. I didn't pick up on the distinction until the end of the application process and could easily have missed the application document(for crying out loud - the disability report was so long, I thought surely it was all that was needed!).

When I submitted the application and report, I was directed to print 13 copies of the medical release form, sign them and drop off or mail them to my nearest SSA office. A couple of days later, I received a letter from SSA telling me it had received my online documents and that I needed to submit the medical releases (although they didn't request 13 copies; instead, the envelope included four copies of the release). Deciding to err on the side of caution, I took 13 signed copies of the medical release to my local SSA office and delivered them to a rep. I was told to look for more mail; my questions about when and what would be next were all answered, "Look for a letter." So, I'm waiting for mail.

I advised my local doctor and transplant coordinator that I'm applying for disability benefits and to expect requests for documentation, etc., in hopes that they will respond quickly. I'm guessing data collection is the next step and I'd hate for the process to get hung up because medical information isn't readily available.

I'll keep you posted.

Photo by Giuseppe Acquaviva

There Might be More to My Liver Biopsy Results than Originally Thought...

2009-03-23T21:06:00.000-07:00

Plasma in the liver tissue from last month's biopsy? That's why my most recent set of labs included a test for autoimmune hepatitis? And it looks like the result was positive? What?!!!

So I discovered last Friday. I ran to my computer, as I do, and spent an hour or two Googling away, a frown on my face. Here's what I found on WebMD.com:

Autoimmune hepatitis triggers the body to attack its liver cells, as if the liver cells were harmful foreign bodies. Patients with a combination of HCV and autoimmune hepatitis generally suffer from more debilitating symptoms than patients with HCV alone.

Well, awesome. My body might be fighting itself, in tandem with Hep C. We're a bit alarmed and worried; I need to find my inner peace and patience as we sort out this latest wrinkle. And I'm so damn tired of the "surprises," none of which are pleasant. Oh - my liver enzymes are higher than ever (ALT is over 500!). More blood work next week will provide answers, but I have no talent for gracefully waiting.

Do you know anything about autoimmune hepatitis? If yes, please leave a comment. The more information I can get my hands on, the better.

Artificial Liver Shows Promise

2009-03-23T06:39:00.000-07:00

You've heard the stats: Each year fewer than 6,000 liver transplants are performed, yet 27,000 more people die from liver disease. One way medical researchers hope to save more lives is by developing an artificial liver that will help patients suffering an acute liver episode to survive until a transplant can be performed.

Six-year-old, California-based Vital Therapies, Inc. is developing ELAD, "...the first human cell-based bioartificial liver... (that) provides support for patients with severe liver failure by processing toxins and synthesizing proteins and metabolites that are key products of normal human liver function."

Although similar to kidney dialysis, a viable liver substitute must perform the organ's chemical functions as well as filter toxins. ELAD uses human liver cells as part of its design, hence it's description as a "bioartificial" device. Very 21st century, albeit a bit creepy.

ELAD has already saved lives and further studies get underway later this year. Fingers crossed, everyone. With advances like this, can man-made replacement livers be far off? I surely hope not.

Next Stop on the Liver Transplant Rollercoaster: Social Security Disability

2009-03-22T20:56:00.000-07:00

I haven't worked for two-and-a-half years. Never in my wildest dreams would I have imagined it would be so, considering that I moved away from home at 17 and earned enough to support myself for nearly 30 years (and support my two children, without financial assistance from anyone else, for six of those years).

I quit working about 10 weeks before my liver transplant and haven't been consistently healthy and/or energetic enough to resume full-time work. Or even part-time work, for that matter. Debilitating fatigue is the main culprit, compounded by my weakened memory and "brain fog," as the experts call it.

Our household was structured on two incomes and trying to live on one isn't working. To help cover our monthly expenses, we got a home equity line of credit - that money is gone. We also swallowed our pride and borrowed money from a family member and used it to pay expenses, too. Now, having tapped every available financial resource and pinching our pennies as hard as possible, we still need more income, so I have filed for Social Security Disability payments.

My doctor broached this topic with me about six months after the transplant but I waved it off, insisting that I would certainly be able to work again soon. The thought of being labeled "disabled" was, and still is, embarassing to me; "disabled" applies to people who can't care for themselves... and independent, proud me can certainly take care of myself. Yet no matter how much I might choke on the bite, I'm eating humble pie now and admitting that for now (and who knows how long) I can't financially provide for myself and my family.

Adding this part of the transplant experience to my blog was something I debated. Ultimately, I decided that my blog is only as helpful to others as I allow it to be. Hence, I'll describe the process and what I learn as I navigate the Social Security Administration. Lord, please grant me patience.

Photo by Sufi Nawaz

Liver Transplant and Hepatitis C Data: Sobering Stats

2009-03-10T08:59:00.000-07:00

A recent email from HCV Advocate included an item that immediately caught my attention, "HCV Treatment after Liver Transplantation."

The report, recently published in Liver Transplantation, reviewed data on HCV treatment in post liver transplant patients. I gasped when I read one of the statistics noted in the report:

The 5-year survival rate is 30% for those with HCV who have had a liver transplant and have progressed to cirrhosis

Stats like this keep me awake at night. My liver transplant was just more than two years ago and already fibrosis, the precursor to cirrhosis, is present in my liver. Granted, the fibrosis score is fairly low, but Hep C is damaging my new liver.

My recent bout of elevated liver enzymes had me wringing my hands for this very reason - and that's before I saw the stat. Yikes!

The course of Interferon and Ribavirin I took in 2007 didn't clear the Hep C virus from my system. A number of new meds are in development and appear promising. Here's hoping they reach the market soon.

Good News from Liver Biopsy Results

2009-02-21T13:59:00.000-08:00

It's only a flare-up of Hep C! Yeah!

My transplant coordinator called yesterday and told me that my elevated liver enzymes are a result of a flare-up of Hepatitis C and are NOT related to any sort of organ rejection. Whew! We're relieved; it's never great to have elevated liver enzymes, but it's less bad (?huh?) to have a flare-up than to experience rejection and have to take steroids.

That's the good news. So, why the flare-up and what can I do to help prevent them? Focus on and improve my metabolic condition - eat healthily, lose weight (gasp - 30 pounds), get some exercise, control my blood sugar and manage my stress. These things I can do. It will also help reduce my steatosis, which is fat in the liver (mine has increased a lot since my last biopsy in June 2008 - fatty liver is NOT good, especially when you have Hep C). This just sounds gross, doesn't it? Ack!

In A Guide to Understanding Hepatitis C at HCVAdvocate.org, the link between stress and Hep C flare-ups is explained:

Controlling stress is a major factor in managing HCV disease. Living with a chronic disease is stressful. Many people report 'flare-ups' (periods of increased symptoms) following episodes of stress. Exercise, meditation, and time management can all help reduce stress. Try to maintain a realistic picture of your health and a positive attitude. Understanding the severity of your liver disease is an important part of having a realistic picture of your condition.

Financial strains have created an unbelievable amount of stress for my husband and me during the past year (well, more like two years - however, the stress has been truly difficult for the last six months). If stress causes flare-ups, then I came by mine honestly. I also had a flare-up last October/November. Hhmm. I need to consider meditating again.

This week was a challenge, to say the least. Thanks for your prayers.

Yesterday I Had a Liver Biopsy; Now We Wait

2009-02-19T06:58:00.000-08:00

As I noted in a previous post, my liver enzymes are significantly elevated and I need to have a liver biopsy in order for my docs to determine what caused the spike. I did some online research and discovered that specific indicators will be present in liver tissue if I'm experiencing rejection; hence, bloodwork alone isn't enough to diagnose what is happening. (Another cause for the spike could be a Hep C flare up.)

My husband and I left our house at 5:00 a.m. yesterday and drove to my transplant center for the biopsy. I'm worried about what might be happening to my precious liver, but surprisingly enough, I wasn't as panicked yesterday as I've been on other occasions (however, I know I annoyed my husband with some back-seat driving; sorry, honey).

I'll tell you about my liver biopsy, in case you haven't had one. As far as liver transplant-related procedures go, this one is pretty easy. My visit to the transplant center started at the lab, where vampires drew some blood (EVERYTHING starts with a blood draw, it seems); the blood test was a PT/INR, which measures blood clotting time. Then we checked in at the GI waiting area and a few minutes later were sent upstairs to the procedure room. The docs and nurses reviewed paperwork with me, started an IV, gave me a warm blanket (it was chilly in there) and made certain that everything was ready to go.

Next, the doc used sonogram to indentify a good spot to do the biopsy (he chose to insert the needle between my ribs; needle placement is always critically important). Some patients choose to not have any pain medication for the procedure (a large group of liver transplant patients have no sensation in the area around their liver because many nerves are cut during transplant surgery; I still have feeling there so I always request pain meds). One or two minutes after the doctor marked the needle placement spot on my side, poof! - I was out. I came to about an hour later. Once the nurses were certain that I was fairly steady and conscious, they wheeled me to the hospital entrance where my husband was waiting, loaded me into the car and we were off. Lab draw and all, we were done in 3 1/2 hours.

The biggest impact on me was being sleepy from the meds; I slept on the way home and most of the afternoon and evening. Today I'm pretty much back to normal (although still a bit tired). I'm at the hardest part of the procedure, which is waiting for results.

A quick note about my transplant center: I have been critical about some of the care I received at my center, because it was poor. Yesterday, though, it couldn't have been better. The docs and nurses were absolutely wonderful, friendly and caring, and I'm impressed and grateful.

One last note: A reader left a comment about how pain meds weren't made available to him for his biopsy (he is waiting for a liver transplant). I think that's crazy. Why make a patient suffer? I believe we heal better when our bodies have been treated gently and with care; otherwise, we're healing from our illness/injury AND trying to recover from the impact of the pain.

Graphic courtesy of Medline Plus/A.D.A.M., Inc.

TIME Magazine's In-depth Look at Medicine and Religion

2009-02-17T06:25:00.000-08:00

The new issue of TIME just arrived and I can't wait to read the Mind & Body special feature by Jeffrey Kluger. "How Faith Can Heal" is a multi-page assessment of how people all over the globe turn to God during times of illness. As Kluger puts it,
... there is nothing we pray - or chant or meditate - for more than health.

The section is comprehensive, covering everything from Holy Water in Lourdes, France and the Holy Rock in Lac, Albania, to a Shamanic ritual in Siberia, Russia and Santeria ceremony in Havana, Cuba. It also recommends books and websites.

Given my chronic illness, I intend to read every word of the section - even the technical medical terms I don't understand. I'm a left-brained cynic for the most part, yet I firmly believe in the power of prayer and, more importantly, in the power of faith, which have carried me through my challenging journey.

Let me know what you think once you've read the section. I appreciate other people's perspectives because they teach me and broaden my appreciation for almost any topic.

My Liver is Misbehaving

2009-02-14T10:09:00.000-08:00

Two days ago I saw the vampires, who drew blood for my regular set of "how's-the-ol'-liver-working?" lab tests. Yesterday afternoon, at nearly 6:00 p.m. on Friday, my transplant coordinator called - and given the timing and knowing she was working late, I knew the news wasn't going to be so great. It wasn't.

Looks as though the supposed Hepatitis C flare-up I had three months ago has recurred. Here were the results for the key labs we track:

Alkaline Phosphate 316
GGT 570
AST 355
ALT 417

AST and ALT are the more critical elements and given that the normal range for both is 0 - 40, my results aren't good news. I need to go to my transplant center next week to have a liver biopsy, so we can find out what's gone awry.

I don't have to throw myself off the roof or anything yet, but I'm worried. The best guess right now is that I might be experiencing some degree of rejection. I'm not familiar with this (I had a rejection episode when I was in ICU after my transplant, but don't remember it - or much of anything else - from that period of time). I now get to learn about the different degrees of rejection and what is done to treat it. I thought if you experienced rejection, the liver simply failed, fell out of your body and you needed a new one so desperately that anyone involved jumped into a helicopter to fly around and look for a liver. Apparently, that only happens on TV.

When you read this post, would you please say a little prayer that my liver settles down and gets back to work? I will be ever so grateful.

Hepatitis C versus HIV/AIDS

2009-02-11T20:19:00.000-08:00

I subscribe to the HCV Advocate Weekly News Review and today's email had some eye-opening information comparing Hepatitis C and HIV. I didn't know that...

* About 3.2 million people in the U.S. have chronic Hepatitis C, compared to about 1.1 million with HIV.

* HCV is harder to kill than HIV and can live longer in blood outside the body.

* Thanks to greater awareness and precautions, the overall number of new HCV infections has fallen dramatically – to about 19,000 cases annually, compared to more than 50,000 for HIV...

I sometimes wonder if Hep C will achieve the level of public awareness that HIV and AIDS have. Of course, it took many years and concentrated efforts by many advocates - celebrities, royalty, elected officials and more - to garner such broad attention for HIV/AIDS. Yet since Hep C is more widespread, it's my selfish wish that people will one day be equally passionate about finding a cure for it.

If you or a loved one has Hep C, be sure to check out the HCV Advocate website. It's a one-stop site for current news on Hep C-related news. Plus, there currently is a notice on the site's home page announcing that it has re-launched the HCV Advocate Medical Writers' Circle, stating, The authors of the MWC are some of the most highly respected hepatitis doctors and researchers from around the world... From time to time, these doctors contribute their expertise to our site. The articles they write cover various topics and are designed to help educate and support our readers.

With only a quick glance over the articles, I've already found several must-reads. Check it out.

Can't Remember What the Doc Says? Get it on Tape

2009-02-08T09:59:00.000-08:00

When I was being evaluated for the liver transplant waiting list, my husband and I visited my transplant center for two days of poking, prodding, scanning, mental evaluation and consultation with a transplant surgeon. Needless to say, the experience was exhausting and when we finally met with the surgeon, Gene and I were mentally spent. Yet the appointment was key for us, because the surgeon was going to share essential transplant information - statistics, short- and long-term health issues, details about donor selection and matching, and more.

My husband is the "memory" in our family (he recalls things verbatim; remembering is NOT my gift); however, given the schedule and our stress level, Gene was uncertain how much he would recall from this critical meeting. Since we couldn't rely on our own ability to recall, we decided to take a micro-cassette recorder with us - it was one of the best decisions we made throughout this experience.

As it turned out, we spent about 45 minutes with the surgeon, who happened to be the head of the liver transplant surgical team (it was our good fortune that he was in clinic that day). We asked permission to tape the conversation and he agreed, so we were able to record not only what he said, but our questions and his answers.

IMPORTANT NOTE: Ask permission before you tape the conversation. There may be legal ramifications if you don't; plus, it's just creepy and wrong. Keep your karma positive because your life is going to be in their hands!

We've listened to our recorded meeting many times, both before AND after my transplant, and pick up something new each time. My liver disease-fogged brain couldn't (and still can't) retain it all. If you don't own a micro-cassette player and can't borrow one, a new one with tapes will cost around $40. It's money very well spent.

When You Need to Find Someone Who Has Walked in Your Shoes, Where Can You Turn?

2009-02-06T09:10:00.000-08:00

As a liver transplant patient, you quickly learn there aren't many of us out there. According to the Organ Procurement and Transplant Network, fewer than 6,500 liver transplants were performed in 2007 (the most recent year for which complete numbers are available), yet as of January 30, 2009 nearly 15,900 people are on the liver transplant waiting list.

So who do you talk to when you're worried, scared or frustrated? Your spouse or friends are probably as alarmed as you; dare you burden them with your unspoken fears about dying? Doctors can give you basic information, but like the title to this blog, there's plenty they can't or don't share. And this experience is so one-of-a-kind, with unexpected and sometimes bizarre "issues," that only another person going through the same thing can relate.

Many transplant centers conduct support groups for their transplant programs. My program does, but because my center is a two-hour drive away (one way), attending support group meetings isn't practical nor feasible. Furthermore, prior to and immediately after my liver transplant, I didn't want to attend a support group meeting because I thought negative stories, if someone shared them, would pre-dispose me to having a negative mindset about my transplant. (In retrospect, that's kind-of ironic.) However, a year after my transplant I was desperate to find someone who had "walked in my shoes." So I began searching.

My solution? Yahoo Groups - or specifically, a Yahoo group for liver transplant patients and their families and friends. Just reading others' posts has given me a far more realistic picture of liver transplants. Some of the members have had amazingly smooth transplants with few complications (What is that like? I wonder); others have gone through unbelievably difficult challenges. Some members died. Many are adults, yet some are parent of children who need transplants and their recounts are heart-wrenching.

Most importantly, they're wearing my shoes, so to speak. And it's a huge relief to have this connection with a group of people who don't judge me; instead, they are sympathetic or, more powerfully, empathetic. The emotional support they provide is priceless.

If you are on your very own liver transplant journey, strongly consider a support group. It's made a positive difference for me and I hope you can find the same. Or sign up for the liver transplant group (you can use the link below).

If you have other recommendations, please leave a comment and tell us about them. Sharing is good karma! Photo by Ekaterina Boym-Medler

Celebrating Because a Friend is Cured of Hep C

2009-02-05T16:05:00.000-08:00

Late last year I received news from a close family friend that he is “… officially cured of Hepatitis C.”

What incredible, fabulous news! Chris discovered that he had Hep C nearly 13 years ago and recently underwent 18 months of treatment on Pegulated Interferon and Ribavirin treatment. His viral count has been zero (undetectable) for more than six months, which is the benchmark you must reach in order to be “cured.”

I’m thrilled for Chris and his family. His wife is one of my dearest friends and their family, including two busy teenaged children involved in sports, was stressed to the core during his grueling treatment. Like most other patients taking these drugs, Chris was severely fatigued, experienced weekly bouts of flu-like symptoms and suffered from symptoms of depression. In spite of all the challenges, he stuck with the treatment and, thank God, it paid off.

Since my transplant I’ve learned that they key to overcoming Hep C is to go undergo treatment before your liver becomes too damaged. I know first-hand how difficult treatment is; I first tried the treatment in 2000, as a single mom raising two children running my own business; I only lasted three weeks. It proved to be too debilitating (I felt sick the entire time and couldn’t work much; not working wasn’t an option), so I quit.

Just six years later, Hep C had damaged my liver beyond repair and a liver transplant was my only answer; without it, I would die. Five months after transplant, the virus had already damaged my new liver (I had stage 2 – 3 fibrosis) and a couple of months later I resumed the Interferon/Ribavirin treatment. Sadly, the drugs weren't effective; however, a biopsy last summer showed that the fibrosis had dropped to stage 1, but the improvement can't be directly attributed to treatment.

If you’re debating whether or not to try treatment for Hep C, DON’T WAIT! Get every bit of support you can and start Hep C treatment as soon as you can. This disease doesn’t just shorten your life – it diminishes your quality of life.

Take it from me: The alternative to Hep C treatment – a liver transplant – is nothing you want to have to undergo.

A Real Pain in the Leg

2009-02-03T07:59:00.000-08:00

Everyone gets a muscle cramp from time to time. For me, it's usually the calf of my leg and I can relieve it by eating a banana (for the potassium) and walking or stretching. They are uncomfortable but no big deal.

That was before I had end-stage liver disease. Muscle cramps became one of the most challenging, if not the worst, symptom I experienced when I was sick.

Four or five months before my liver transplant, I began having bad muscle cramps in my legs and feet. Really bad cramps, whose frequency and severity increased as time passed. Then I began having them in my hands, too. These "cramp attacks" happened without warning at all times of the day and night. Night cramps were the worst, because they would jolt me out of my sleep (and I wasn't sleeping well then, so it was insult to injury) and keep me up for an average of one to two HOURS. Yes, you read that right: hours.

I never really understood what caused the cramps. Thinking that the diuretics I took (because of water retention) had depleted my body of potassium, I ate bananas, but no luck. My doc prescribed potassium supplements, muscle relaxants and sleeping meds, but no luck. Someone suggested tonic water; again, no relief. Actually, nothing made the cramps stop.

The cramps were so bad that there were times when I couldn't go up and down the stairs in our townhouse. On other occasions, my husband had to help me dress because I couldn't bend my leg to put on pants or socks. And losing sleep because of the cramps was insult to injury.

The cramps subsided only after my liver transplant and I haven't had one since. But more than two years later, I still recall how miserable they made me. I'm glad they're gone!

A Pesky Little Symptom of End-stage Liver Disease

2009-02-02T07:43:00.000-08:00

Prior to my transplant, when I had end-stage liver disease, I experienced an array of related health issues that were bizarre or bothersome or painful, and sometimes all of these simultaneously. They sucked.

This morning I was reminded of one of these symptoms when I made an appointment to see my otolaryngologist - fancy word for ear, nose, throat doc - for an ear issue (I've had them since childhood; they aren't liver related). I remember that I last saw him 2 1/2 years ago because of nose bleeds. Yep, nose bleeds - just another one of the pesky little symptoms that may or may not plague other people awaiting liver transplants.

Here's what The Hepatitis Trust says about the condition:

Abnormal Blood Clotting (Coagulopathy)

The liver makes a number of coagulation (clotting) factors including prothrombin and fibrinogen. Most of these require the presence of vitamin K to function normally. Vitamin K, which is a fat soluble vitamin, in turn requires bile salts to be absorbed properly by the body. If the liver does not produce enough bile this will have a knock on effect on the capacity to clot blood. This can lead to so called thin blood and increases the risk of bleeding. Warning signs of mild coagulopathy problems include frequent nose bleeds, prolonged bleeding of the gums, and bruising easily. You should see a doctor immediately if any of these warning signs are present.

Before my transplant I didn't experience varices - bleeding in the esophagus that is extremely serious because it's unpredictable and can be fatal - yet I sometimes wondered if it were possible to bleed to death through my nose. My nose bleeds occurred randomly, without warning, and sometimes would not stop for extended periods (15 to 30 minutes, which seemed like a lifetime when I was in business meetings).

So, I saw Dr. M and learned that the procedure to address the bleeds required cauterizing some of the blood vessels running to my nose. As I frowned at that prospect, he went on to say that any relief would be temporary and the only real way to "fix" the problem was by having a liver transplant. Sure to his word, I haven't had a single nose bleed since my transplant (though, in retrospect, the cauterization procedure would surely have been easier than a transplant; at least I didn't have to do both!).

As awkward and challenging as they were, the nose bleeds didn't hurt. At most, my nasal passages felt raw at times and I used a nasal moisture product to ease the discomfort. On a "This Sucks" scale of 1 to 10, with 10 being the suckiest, I give nosebleeds a 3 to 4 (mostly because of the mess and how much they alarmed other people). I had other symptoms of end-stage liver disease that were FAR worse - and I'll tell you about them another time.

Need a Liver? Grow Your Own

2009-02-01T09:34:00.000-08:00

The current issue of TIME magazine has a fascinating cover story, "Stem Cell Research: The Quest Resumes," that is a must-read for anyone suffering from chronic illness or disease. As stated in the article, "On Jan. 23, after nearly a decade of preparation, the Food and Drug Administration approved the first trial of an embryonic- stem-cell therapy for a handful of patients paralyzed by spinal-cord injuries."

Scientific gains from these trials and other ongoing stem-cell research have the potential to impact nearly every facet of medical research, including liver disease and organ transplantation. It's not implausible, researchers say, to expect that patients will be able to grow their own replacement organs, thereby negating the need for immunosuppressants. Given the negative side effects associated with these drugs (high blood pressure, high blood sugar, kidney damage, magnesium depletion, upset stomach and more), eliminating immunosuppressants will be extremely beneficial.

Beyond transplants, stem cell research could one day lead to a cure for diseases such as Hepatitis C. If a medical researcher somewhere needs a Hep C-infected, post-transplant liver patient to participate in a clinical trial involving stem cells, count me in. My children are just 15 and 16 years old and if I want to live long enough to meet my grandchildren, scientific breakthroughs must occur. I'll gladly do my part!

Liver Transplants and Depression: What the Research Shows

2009-01-13T08:29:00.000-08:00

Depression is fairly common in the world of liver transplantation. The blues often set in before surgery: An estimated 31 to 50 percent of patients awaiting transplant experience some degree of depression. Even after transplant surgery, with a healthy liver in place, some patients begin or continue to feel depressed. One year after transplant, Hep C-infected patients (like me) experience greater depression than non-Hep C patients (they also have a lower quality of life and less physical functioning than other transplant patients).

As I looked for information about liver transplants and depression, what surprised me most was the lack of information on this topic. Granted, I only can access the research, journals and reports available online to the average layman who doesn't subscribe to medical search engines. Nevertheless, given the prevalence of depression in patients, I expected to find info more readily accessible.

If you have information on this topic, please leave a comment. Information is power... and to people (like me!) who are feeling depressed and tired, it could be a wonderful antidote.

When It Comes to Divorce, Organs Are Assets

2009-01-08T06:50:00.000-08:00

From the "Are you kidding me?!" file is the current news story about a divorcing couple in New York and their bizarre battle over marital assets. Apparently, the husband considers his kidney an asset - that is, the kidney that he donated to his wife in 2001 - and "wants his estranged wife to return the kidney" or pay him $1.5 million as compensation.

What kind of crazy litigious society are we living in? I was divorced and know first-hand how incredibly difficult and emotional the process can be. But to try to leverage your position by asking for your donated organ to be returned? Sick, sick, sick.

This couple has three children. For the childrens' sakes, they need to wrap up the divorce and move on with their lives. Settle, people, settle!

Post-Transplant Depression: My Friends Stage an Intervention

2009-01-05T06:54:00.000-08:00

Continued from my last post...

Apparently, my closest friends had noticed my unending depression, so like all concerned girlfriends, they talked amongst themselves. A LOT of them were in on the discussion, it seems - at least six that I know of, so far - and they also conferred with my husband about how I always seemed tired, hardly left the house, didn't socialize much, looked like crap and so on. Essentially, they felt that I was "stuck" and needed help - professional help - to move forward.

And so, one girlfriend called to say that she'd be near my home Friday morning and wanted to stop by for a quick visit. "Sounds good," I said. "Looking forward to seeing you."

On her way to my place Cari called to tell me that she would arrive soon. "By the way, Carolyn is stopping by, too," she said. Wow, I thought, This is great. It's going to be fun to catch up. I'm so gullible sometimes. Duh. It's Friday morning and two of the busiest people I know are skipping work to "pop in and for a quick visit." Yeah, right.

The gals arrived and with coffee mugs in hand, we settled into the living room and chit-chat ensued. Within a couple of minutes, though, the conversation turned serious. They told me how they had observed my blues, the rut I was in, the considerable duration of my depression. Carolyn and Cari confessed that they had spoken to others, including my husband. They explained their wish for me to work through my depression, and their belief that I needed professional help to do so. They told me about a good counseling resource that accepted my medical insurance and offered a few names.

After a few silent moments of pondering, I had to agree with them. I needed professional counseling to help me through my depression. The cost was a concern (we are BROKE!), but I pledged to make the necessary phone calls and obtain the assistance I needed.

A brief aside about friends: I often think about my friends and how much I value them. As stated on a needlepoint piece that was a gift from a girlfriend, "Friends are the family you choose." My friends truly are my family, because outside of my husband and children, they are my primary sources of encouragement and emotional support. Regardless of the need, I can always find friends' helping hands reaching my way. And if the need is extreme, my friends band together and "circle the wagons," as they did during my transplant.

My closest friends also love me enough to intervene, sit me down and tell me the harsh truth, even though it might hurt me to hear it. Not just anyone can get away with that. And there aren't many people I love and trust enough to hear clearly, even when the news is bad. Each of these friends is worth her weight in gold.

So I did as promised. It took about three weeks altogether, but I received authorization from our health insurance company, made an appointment and finally met with a counselor just before Christmas. I'll tell you about the appointment and about a long, difficult conversation with my husband - which proved to be my "Eureka!" moment - in another post. My next post is going to address transplants and depression, and some of the things I've learned about this issue and how it is - or isn't - managed through the healthcare system.

My Transplant and Depression: Life on the Dark Side

2009-01-04T19:18:00.000-08:00

There is a television commercial that starts something like this, "What does depression look like...?"; it continues with sad pictures and images of people lying around with dark circles under their eyes, all the while promoting the merits of a particular antidepressant.

For more than two years now, I would argue that depression looks like me... me living life on "the Dark Side." I'd taken antidepressants on and off for years prior to receiving the news that I needed a transplant; the on-and-off nature of my medicine consumption occurred because when the antidepressants worked, I'd decide that I no longer needed them until a few months (or sometimes years) would pass, I would become depressed again and resume taking them. The transplant diagnosis made me pretty upset (absolutely freaked out, to be honest) and as I became sicker and more worried about the surgery, I became more depressed. So my internist increased my antidepressant, telling me that many or most transplant patients take antidepressants because of the emotional impact of the surgery and recovery.

Six or seven months after my difficult and complicated transplant, I was again depressed, due to seemingly endless health issues, financial problems, inability to be Super Mom (or even Average Mom). The load was taking its toll and I couldn't seem to snap out of the blues. Both my local internist and my hepatologist at the transplant center urged action, so my antidepressant dosage was increased again.

And so for the next 15 to 18 months I dragged along. Whenever my energy level improved I'd feel better, more positive - but then one of the seemingly never-ending "hiccups" would occur, I wouldn't feel so well and then I would become frustrated and depressed once again. It sucked. I stayed home, rarely wore makeup, napped often, grumped "Why don't I feel better?" and fruitlessly tried to exert control over an uncontrollable situation. Yes, depression looked like me.

My internist was concerned. I was taking about as much of my antidepressant as was reasonable, so she recommended cutting back on it and adding a second one to balance out my moods and hopefully help boost my energy and sense of well-being. At that time, however, I was experiencing increases in some of my liver function lab tests - not a good sign. I thought it would be best to delay adjusting any meds until the labs/liver function matters were sorted out, so I bided time by wringing my hands and worrying about my new liver. Finally, after six weeks or so, the labs stabilized and I could consider starting the new antidepressant.

And then came the intervention.

I'll tell you about that on my next post.

New Year, New Attitude

2009-01-01T12:45:00.000-08:00

It's January 1, 2009 and I know many people are elated to see 2008 end. It was a very tough year for me and my family, but there were plenty of bright spots, too. I would categorize last year as "transitional," with lots of changes, challenges and learned lessons.

One of the most significant lessons I learned was about my health and ongoing depression (since my transplant; it worsened over time). I'll be posting about that on this blog over the next few weeks - many, or most, transplant patients (and people with other chronic illnesses) struggle with the blues in some fashion and perhaps reading about my experiences will prove helpful, in a what-not-to-do way.

I look forward to 2009 with a new attitude, with optimism and hope, reflecting on the message I discovered in a fortune cookie:

"Your path may be difficult, but will be rewarding."

Photo credit: Radu Andrei Dan

Yet Another Post-transplant Email - I Finally Leave ICU after 18 Days!

2008-12-10T18:04:00.000-08:00

Friday, December 22, 2006 11:26 a.m. (sent by Gene)

Dear friends,

News Flash: Jay is out of ICU!

I just wanted to send a quick note to share the good news... Jay just continues to surprise... on Tues. evening (12/19), she endured another round of complications that I was convinced would set her back. But Jay bounced back miraculously the next day, and then last night - after 18 days in ICU - the doctors pronounced her healthy enough to move to intermediate care!

Within the last 24 to 48 hours, Jay has:
* completely stopped using the ventilator; breathing all on her own. (She still has a trache tube as a precaution, but this likely will be removed within a few days. Should be able to talk soon.)
* started sipping drinks (water, Gatorade, apple juice).
* yanked out her feeding tube - for the third time! Nurses not happy about this development, but finally have caved in to Jay's persistence. They now say if she can eat enough food on her own and get sufficient nutrition, she can ditch the tube.
* ordered husband to fetch her a hamburger meal. He refused following doctor's orders; Jay not happy with husband.

That's all the good news I have for now, but it should be plently. Thanks for all of your prayers... they are definitely working.

I'm off to visit Jay in her new room...

Gene

Happy Birthday to My Liver

2008-12-03T16:36:00.000-08:00

Today – December 3rd – is my other birthday.

Two years ago I had the liver transplant that saved my life. Last night, my husband and I reminisced about how the experience unfolded: THE telephone call that came midday on Dec. 2nd; a flurry of phone calls, arrangements, packing; the two-hour ambulance ride through a drenching thunderstorm; all the rushing, just to get to the hospital and then having to wait six hours for surgery to begin (the operation started around 1:00 am, which is why Dec. 3 – not 2nd – is my other birthday). And ultimately, good news that the transplant was successful.

I am grateful and humble when I remember this day and all that went before and after. There are many, many people to thank; please indulge me while I recognize just a few of them:

* First and foremost, my husband, Gene, who walked every step with me. I had it tough, but at least I was on drugs. He persevered through it all, God bless him.
* Carolyn, Chris, Happy and Dene, who traveled to the transplant center with us and helped Gene survive the hours of waiting both before and during my surgery
* Carolyn also visited often and was the positive force that kept Gene’s spirits up, spoiled the kids with Christmas gifts (Wii? Tiffany’s bracelet? I was NOT consulted about these gifts!) and was the glue that kept our world together
* Regina, who dropped everything and put her life on hold to stay with our kids for two weeks AND had our carpet cleaned while she was here
* Larry, who with Chris, helped our son transition into crew and made sure he always had transportation to and from practice
* Karen, who visited frequently, drove kids to and fro, and made sure the whole family received new pajamas on Christmas Eve
* Cari, who along with Carolyn and Karen, made sure the kids had a fabulous Christmas and plenty of gifts, including the leopard print desk chair
* Peggy and Dave, and Pam and Steve, who hosted our children several times and always at the spur of the moment
* Debbie, who was master of the “feed Jay’s family” schedule – no small feat – and kept it organized for many months while I recuperated
* Gary, with Dene, who took the kids on an eight-hour (one way) road trip to attend a family gathering, and who endured Dene’s absences while she babysat me once I finally returned home from the hospital
* Helen, the fabulous type-A powerhouse who drove two hours to visit me in the hospital and rub lotion on my feet (is there anything better?!), and together with her husband, Rick, secretly continue to do many good deeds that make the world wonderful
* Sally and Angie, who made sure our power bill got paid * Allen, who with Happy, brought me communion every week for months and prayed for me and my family
* Rosemary and Dick, who sent me a prayer shawl from their church in Huntsville

These are just some of the countless people who helped us time and time again, each and every one of whom I cherish. Thank you to these friends and family who were the key support system that sustained us. My sincere gratitude, too, to Dr. B, Laura, Theresa, Dr. S, Dr. K, Dr. Z, Dr. R and so many other medical professionals who kept me alive.

Dec. 3rd will always be an extraordinary day in my world. My family will celebrate tonight with a special dessert – chocolate chip cookies made by my daughter. Yeah!

For everyone waiting for or recovering from transplant surgery, I send you my best wishes. It can be a long, tough road but in the end, it’s well worth the struggle and sacrifice.

God bless.

Transplant Center Stats - Does One Bad Apple Spoil the Whole Bunch?

2008-11-23T07:23:00.000-08:00

A front-page article in the November 21st issue of The Wall Street Journal, "Doing a Volulme Business in Liver Transplants," was thought-provoking and, ultimately, disturbing. According to the article, the non-profit University of Pittsburgh Medical Center (UPMC) hired an innovative and aggressive surgeon, Dr. Amadeo Marcos, to head its under-performing liver transplant program, with the directive to increase the number of liver transplants performed every year. Dr. Marcos doubled the amount of liver transplants conducted at UPMC, but this achievement was in question because "... he resorted to practices that some colleagues found questionable... he used more livers from older donors [and] transplanted some of these into relatively healthy patients for whom the risk-reward calculation was less certain. He used partial livers from living donors, and then understated complications from the controversial procedure."

My husband and I discussed this article and what it could mean to transplant candidates. Prior to my surgery, we did a lot of homework, including reviewing transplant survival rates for liver transplant centers within a four hour drive of our home. We wanted a transplant program that had the following: 1) most importantly, a track record of performing a reasonably large number of transplants annually (to help ensure that the surgeons and staff were highly experienced and that a liver was likely to be available when I needed one); 2) was close enough to our home that pre- and post-transplant doctor appointments wouldn't be too overwhelming; and 3) was part of our health insurance plan.

It never occurred to us that we should be concerned about the accuracy of the transplant data we reviewed. We knew that not every available liver was top-rate (from a young, healthy donor), but our transplant team explained that if there were any issues about the donor liver, we would be told prior to surgery and have the option of rejecting the liver. (Note: We were told that my donor liver was in excellent condition, so we never had a discussion about possibly rejecting it.)

I believe that the situation at UPMC was the exception to the rule, that most transplant centers, doctors and staff put patients, not profits, first. But the article raises a valid question and I don't know how it can be answered. How can you tell if a program is operating under a risky protocol? Do centers publish their donor organ selection criteria? If you believe the organ you're offered isn't acceptable, does it mean that you're a "troublemaker" and won't be treated fairly or objectively?

The article raises many questions and I'm very curious about possible answers. Please leave a comment and share your thoughts, knowledge and other questions - this topic warrants a healthy discussion.

A HUGE Medical Breakthrough - Stem Cells Used in World's First "Tissue-engineered" Transplant

2008-11-19T10:18:00.000-08:00

I've often thought it would be much easier if I could just grow my own replacement liver... and it seems my wish may come true far sooner than expected.

Today's feature article in the British Journal TheLancet.com titled, "Clinical Transplantation of a Tissue-engineered Airway," describes how a 30-year-old Colombian woman whose airway was severely damaged by tuberculosis was transplanted with a windpipe (from a deceased donor) that had been altered with the woman's own stem cells. Although the patient has not taken immunosuppressants since her transplant in June 2008, her immune system has not rejected the transplanted windpipe.

What an advancement! Immunosuppressants are life-savers but they exact a tremendous toll and can cause serious side effects, including high blood pressure, kidney damage, liver damage, increased chances of infection or illness, anemia and/or high blood sugar, to name a few (depending on the immunosuppressant). Some of the side effects don't show up for years and transplant patients must take immunosuppressants for the rest of their lives.

Congratulations to the physicians, researchers and staff at universities in Barcelona, Spain; Padua and Milan in Italy; Bristol, England; and at the Hospital Clinic in Barcelona, all of whom participated in this ground-breaking procedure. Gracias, grazie and thank you.

Florida's Specialty License Plate for Organ Donation

2008-11-17T20:35:00.000-08:00

On July 1, 2006, the State of Florida began offering motorists a new specialty license plate option: "Donate Organs. Pass It On."

In case you're unfamiliar with the program, Florida allows specialty license plates as a fundraising mechanism. Legislative action is required to establish a new plate and applicants must meet demanding eligibility criteria, including obtaining the sponsoring support of a state senator and representative. Once requirements are met and the Legislature approves the bill, the new plate becomes official and production begins.

Here are some stats about Florida specialty license plates for 2007:
- Florida has 109 specialty plates
- Over 1,562,000 plates were purchased (in 2007 alone)
- Most popular plate? University of Florida (more than 105,000 bought)
- "Donate Organs" plate was ranked 89th, with 1,101 issued

Pretty amazing, huh? (1.562M x $25 = a LOT of money!) The plates do more than raise funds; they also raise awareness. I'm a moving billboard of sorts, and I hope the plate reminders drivers following my car to become an organ donor.

I bought a "Donate Organs" plate as soon as I could, in June 2007 when I renewed my license plate. It's a colorful, uplifting design, don't ya think? The $25 fee I paid for the plate (above standard license plate fees) goes to Transplant Foundation, Inc., which is affiliated with the Miller School of Medicine at the University of Miami (Florida), and the money is used to increase awareness of and provide education about the need for organ donation.

I encourage all Floridians to consider getting a specialty license plate. Even in these tough economic times, $25 is an affordable way to support a cause that is near and dear to your heart (or liver, in my case). It's an easy way to help make our world better.

Another Email from My Husband While I Was in ICU

2008-11-14T10:21:00.000-08:00

Monday, December 18, 2006 2:56 p.m. (sent by Gene)

Dear friends,

Anyone who knows my lovely wife knows that she operates on her own unique sense of time, which is a polite way of saying Jay often runs late. And that may explain why her recovery timetable differs from our expectations. At least that's my theory. But if there's one thing I've learned about Jay... it's to just let her do it her way. Might as well because you know she'll get it done right.

It's been two weeks since Jay underwent surgery, and she remains in ICU. But I think we're finally beginning to make some headway and hope to move to an intermediate care floor any day now. Many of you have expressed concern about Jay's long stay in ICU, but rest assured, she's been in stable condition throughout. She's just been stuck in neutral; every time she begins to get better she runs into some complication that stalls her progress. Fortunately, the doctors have witnessed all of Jay's problems before in other patients, and they've been able to find a fix for them out of their liver transplant "playbook."

Last Wed., the doctors performed a tracheotomy to help Jay breathe more easily. She was having a tough time getting off the ventilator but since the procedure has fared much better. Yesterday, she breathed on her own for 6 - 8 hours without any machine assistance! If she can build up her endurance to go 10 hours on back-to-back days, she'll probably ditch the ventilator for good.

A few days ago, Jay's body also exhibited the first signs of rejection. It's a frightening word but something transplant patients will have to deal with for the rest of their lives. Rejection can occur at any time and it can happen quickly or occur gradually. The good news is that there are several immunosuppressive medicines that should manage this problem. The doctors gave Jay some of these meds and they appear to be working well.

All things considered, Jay seems to be doing better. Her trache tube prevents her from talking out loud, but she's trying desperately to communicate. Much to her dismay, neither the nurses nor I can read her lips very well. One day Jay was really jabbering, and I couldn't make out a single word. I suspected that she was in a drug-induced haze and talking gibberish. So I asked her nurse, "Do you think she's lucid?" And before the nurse could reply, Jay shot me an indignant stare. No translation needed. I'll pay for that comment later!

Thanks for all your love and prayers... God bless,

Gene

Just Looking for a Little Respect from the Healthcare System and Its People

2008-11-13T09:29:00.000-08:00

For the third week in a row I'm having to have blood work done, so yesterday I went to see the vampires (phlebotomists; it's my little nickname for them) at my local lab. A new tech insisted on searching both arms for veins, even though I showed him the ONE AND ONLY spot on my body where a vein can by found. He pinched my arms with those stupid rubber straps, had me pump my fists, wiped alcohol all around - and guess where the blood was drawn? Yep, exactly where I showed him to draw it in the first place.

I'm pretty steamed about the incident. How 'bout a little RESPECT, people? Maybe an ounce of compassion? Would you just LISTEN to what I'm telling you?

In the past 2 1/2 years I've had three major surgeries, six or eight medical procedures and about 75 blood draws, each of which required a needle in a vein. I've always been a "hard stick" and these days the sticks are more difficult than ever. Why did the tech disregard my comments? Did he believe he could discover a blood vessel that the other dozens of techs couldn't find? Because I insisted that there would be no iffy attempts, at least I didn't have to suffer through another needle digging around under my skin, hopelessly searching for a vein that wasn't going to cooperate.

This tech isn't alone - the scenario occurs repeatedly. To the phlebotomists of the world, I say, Respect your patients and heed what they are telling you. Especially those of us with chronic illnesses - we already suffer enough.

Maybe, at the end of the day, it's simply putting the Golden Rule into play: Do unto others as you would have them do unto you. As it applies elsewhere in life, this adage can work in the world of medicine. I, for one, will be grateful.

Paying for Transplant Surgery - Can You Afford $500,000?

2008-11-09T07:57:00.000-08:00

How much does an organ transplant cost?

For most of us, more than our house. FAR more. In 2007 the average price of a house was $266,200; the average estimated cost of a liver transplant was $519,600 (www.transplantliving.org). Who has that kind of money in the bank?

My transplant expenses are close to a million dollars now, due to numerous complications and six months of Hepatitis C treatment (which alone cost thousands of dollars per month). I’m very fortunate: Our family has good medical insurance and the vast majority of our bills were covered by insurance. But we’re still paying off thousands of dollars worth of deductibles, co-payments and co-insurance. And some expenses are ongoing: Prescriptions run about $200 per month (that’s our out-of-pocket cost).

The expense of paying the transplant bills and ongoing medical costs is one issue. Our biggest challenge is the dramatic drop in household income combined with the expenses (because of illness I haven’t worked in more than two years). Do the math and it becomes starkly evident: We’re in financial hell.

We’re the lucky ones. Because we had good medical insurance I was able to have my transplant and we’re keeping afloat (well, we haven’t gone under yet!). I often wonder about transplant candidates who have little or no health insurance – what about them? I volunteer with a woman whose brother-in-law died of liver disease because he didn’t meet the financial criteria at his transplant center. Hearing about this shook me to my core. There but for the grace of God go I. And my cousin in Athens, Georgia, sent me a link to a community fundraiser for a 12-year-old girl who needs a liver transplant. (Visit http://www.athensindiecraftstravaganzaa.com/ for information or to make a donation for Olivia King’s transplant.)

Is it ethical to deny medical services to people who can’t pay? Is it fair to expect hospitals to absorb these expenses? I struggle with these questions and of course, I’m biased on the matter. What do you think? Please leave a comment.

Surviving Hepatitis C and a Liver Transplant: Learn the Lingo

2008-11-06T08:25:00.000-08:00

Information is what every patient needs when faced with illness or injury. No matter how much time you invest educating yourself about your condition, you'll never get enough or have too much info.

Let's face it: Medical professionals not only know lots of things we don't know, they communicate using a language that's arcane and confusing. For this reason, one of the first things patients should do is become familiar with the medical jargon specific to their illness.

Over the past couple of years I've expanded my vocabulary to include liver disease terminology, which was necessary so I could follow my doctors' conversations and instructions. Here are a few new words in my vocabulary that describe symptoms and conditions of liver disease (definitions are from hepatitis-central.com):

* Ascites - Accumulation of serous fluid in the peritoneal cavity, usually encountered wtih portal hypertension or heart failure. Uncomfortable accumulation of fluid causing abdominal swelling. This occurs when the blood flow through the liver is obstructed. (I referred to the swelling in my belly as my "liver baby" because I looked very pregnant.)

* Varices (Esophageal and Gastric) - Submucosal varices of the lower esophagus or gastric fundus mucosa are frequently caused by the development of portal collateral vessels as a result of portal hypertension. Abnormally dilated/stretched veins. Dilated veins; these can rupture, leading to massive bleeding. (These are swollen veins in the esophagus that could easily rupture and cause a patient to bleed to death; I managed to avoid this complication.)

* Encephalopathy - A variety of brain function abnormalities possibly caused by circulating gut-derived brain-toxic proteins not cleared by a dysfunctional liver; symptoms can include insomnia, confusion, disorientation. (I had a touch of this and it made me forgetful and sleepy - I referred to it as "liver dementia.")

Searching for these definitions often required looking up definitions of even more terms (e.g., "portal collateral vessels" in the definition of varices, above). Ultimately I was able to boil these terms down to the point that I understood what they were and more importantly, understood what they meant in terms of my illness. My vocabulary lessons continue to this day.

Hepatitis-central.com has an extensive glossary of liver and Hepatitis C terms. If you know of other good resources that define medical words in layman's terms, please leave a comment and tell us about it. After all, you can never have too much information.

Photo credit: Thad Zajdowicz