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

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

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?

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.