Friday, December 4, 2009

Another Milestone: My 3rd Liver Birthday!

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

Thursday, November 26, 2009

The Best Bad News I Ever Received

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

Saturday, November 14, 2009

Curiouser and Curiouser

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.

Monday, October 12, 2009

The Waiting is the Hardest Part

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 Simão; Song and lyrics by Tom Petty

Wednesday, September 30, 2009

How Will You Know if Liver Damage Becomes Severe?

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 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.

Tuesday, September 29, 2009

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

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,

Monday, September 28, 2009

The Next "Thing" is Here: Cataracts

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

Friday, September 25, 2009

(Hopefully) Big News Awaits at the AASLD Conference!

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,

Tuesday, September 22, 2009

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

The 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 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

Tuesday, September 15, 2009

It's Official - I'm Disabled

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.

Saturday, September 12, 2009

Women's Health Issues and Liver Disease

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

Friday, September 11, 2009

Steve Jobs - Back at Work

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.

Thursday, September 10, 2009

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

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.

Tuesday, September 1, 2009

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

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

Monday, August 31, 2009

The Evolving Debate Over Who Gets a Liver Transplant

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

Sunday, August 23, 2009

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

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

Monday, August 17, 2009

Biomarker May Predict Success of Hep C Treatment

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?

Saturday, August 8, 2009

About My Extended Break...

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.

Monday, June 22, 2009

Steve Jobs Gets a Liver Transplant

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.

Saturday, May 2, 2009

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

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

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!

Saturday, April 4, 2009

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

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

Tuesday, March 31, 2009

Applying for Disability Benefits Online

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

Monday, March 23, 2009

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

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
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

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.

Sunday, March 22, 2009

Next Stop on the Liver Transplant Rollercoaster: Social Security Disability

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

Tuesday, March 10, 2009

Liver Transplant and Hepatitis C Data: Sobering Stats

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.

Saturday, February 21, 2009

Good News from Liver Biopsy Results

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, 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.

Thursday, February 19, 2009

Yesterday I Had a Liver Biopsy; Now We Wait

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.

Tuesday, February 17, 2009

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

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.

Saturday, February 14, 2009

My Liver is Misbehaving

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.

Wednesday, February 11, 2009

Hepatitis C versus HIV/AIDS

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.

Sunday, February 8, 2009

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

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.

Friday, February 6, 2009

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

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!
Subscribe to liver_transplant

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Photo by Ekaterina Boym-Medler

Thursday, February 5, 2009

Celebrating Because a Friend is Cured of Hep C

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.

Tuesday, February 3, 2009

A Real Pain in the Leg

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!

Monday, February 2, 2009

A Pesky Little Symptom of End-stage Liver Disease

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.

Sunday, February 1, 2009

Need a Liver? Grow Your Own

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!

Tuesday, January 13, 2009

Liver Transplants and Depression: What the Research Shows

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.

Thursday, January 8, 2009

When It Comes to Divorce, Organs Are Assets

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!

Monday, January 5, 2009

Post-Transplant Depression: My Friends Stage an Intervention

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.

Sunday, January 4, 2009

My Transplant and Depression: Life on the Dark Side

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.

Thursday, January 1, 2009

New Year, New Attitude

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