Friday, October 15, 2010

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

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

Tuesday, October 12, 2010

Diabetes + Steroids = A Huge Challenge

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: 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

Tuesday, September 28, 2010

Prednisone: The Good, the Bad and the Ugly

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 ChoiƄski

Wednesday, September 22, 2010

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

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.

Sunday, September 5, 2010

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

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

Wednesday, September 1, 2010

Sorting it Out

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

Saturday, August 28, 2010

Deja Vu, The Bad Kind

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,

Tuesday, August 3, 2010

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

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

Tuesday, July 27, 2010

Ethics in Transplantation: Deciding Who Gets the Next Available Organ

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

Sunday, July 25, 2010

Researchers Look at Metabolic Syndrome after Liver Transplant

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 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.

Saturday, July 24, 2010

I am the Ringmaster

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

Wednesday, July 21, 2010



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

Sunday, July 18, 2010

The Verdict: I Have Metabolic Syndrome

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

Thursday, July 1, 2010

Same Ol', Same Ol'

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

Tuesday, June 8, 2010

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

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)

Saturday, May 29, 2010

Still Riding the Hep C Rollercoaster

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

Thursday, May 6, 2010

Saving Money on Meds

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

Sunday, April 25, 2010

The Miraculous Merits of Magic Mouthwash

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

Thursday, March 18, 2010

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

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.

Sunday, February 21, 2010

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

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

Sunday, February 7, 2010

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

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