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Jul 18 2009

Meeting the Surgeon and Getting Sicker Quicker

On July 14, Catherine and I spent the day meeting with Dr. Rob Fisher (transplant surgeon), Dr. Todd Stravitz (hepatologist) and April Ashworth (one of the transplant coordinators) at Virginia Commonwealth University. Although it has been eight years since my initial diagnosis, all prior visits had been to the hepatology team, so this was the first opportunity to meet the surgeon.

In addition to being a transplant surgeon, Dr. Fisher is the program director of the liver transplant program at MCV. We were very impressed with him, his experience, and his level of knowledge about transplant programs nationally. He was instrumental in bringing the living donor transplant protocol for livers to the US, was involved in the first living donor surgery, personally conducted the second living donor surgery in the US, and has also personally conducted all 118 of MCV’s living donor surgeries to date. Simply put, this dude knows his stuff. We also learned that fewer than 10 liver transplant programs in the U.S. have conducted more than 100 live donor surgeries, and MCV is among those. I was amazed that Dr. Fisher stayed with us for nearly an hour-and-a-half until our substantial list of questions had been exhausted. After he left, April Ashworth, one of the two Senior Liver Transplant Coordinators stayed another 40 minutes providing additional information about the transplant process. Bottom line, now that we’ve met the front-line team, we have the the highest level of confidence that MCV is the right place for me to be.

Here’s what I learned from the meetings with the above individuals. Although the MELD score is the accepted standard for measuring the severity of liver disease and is used by UNOS to allocate donor livers, it is a notoriously unreliable measure in patients with my condition, primary sclerosing cholangitis. So while my score is only a thirteen (out of a range of 6 to 40), both the surgeon and the hepatologist agree that it’s time for me to be listed. So, with their formal recommendation to UNOS, I can expect to be “listed” in 3-4 weeks. However, once I’m listed the odds of actually receiving a liver are unusually small, because the livers are allocated based on the MELD score.

So, what can I do to improve my odds? What I really need to do is raise my MELD score, and this is where things get crazy. Since the day I was diagnosed, I’ve been taking high doses of a drug called Actigall (generic name Ursodiol), which thins my bile and helps it pass through my very constricted ducts. There is no clear consensus about whether the Actigall in any way changes the progression of the disease, but there is consensus that it makes my lab work appear to be better, and that is the problem. If my goal is to raise my MELD score, now is not the time for good lab results. What’s the best way to fix that? Stop taking the Actigall, the one medication I’m taking that has even the slightest potential for therapeutic benefit. Stopping the medication will almost certainly raise my lab results, hopefully enough to make a material difference to my MELD score, which will then improve the likelihood that I’ll be high enough on the priority list to actually receive a liver. The downside? My symptoms will probably worsen, and I may even do more damage to my liver.

The other option, which Dr. Fisher pushed aggressively, involves finding a living donor. In this type of surgery, a portion of a donor’s liver is removed and transplanted in the recipient. Making this possible is the remarkable fact that the liver can actually regenerate itself, meaning both the donor’s remaining liver and the recipient’s partial liver will be restored to full functioning capacity within a matter of weeks. There’s only one little detail that makes the living donor route a bit difficult…finding a living donor.

So, there are the two options available to me: spend as much as two years on the transplant list waiting for a liver from a deceased donor while facing the risk of cancer during the wait, or speeding up the process by finding a living donor willing to voluntarily subject themselves to 10-12 hours of surgery, several weeks of recovery and the risk of a variety of potential complications. Simple as that.

6 comments

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  1. mike libb

    If mine tests good, I’ll give it.

  2. Becca

    I’ve had PSC since I was 4 (22 now) and got my first liver transplant when I was 8, another when I was 11 and am currently waiting for my third. I take Actigall as well and, of course, am known for having impecable blood tests when I feel the worst. Many pleas to be hospitalized have been dismissed over the years as you can well imagine.

    I’ve been on the transplant list at UNMC (university of nebraska medical center) for a year now and I’m very fed up with this whole MELD business. Back in the day there were no MELD scores. My first transplant I got after 3 months on the list and my second after 6 months. Also, I was in school and dance classes up until I got the call. I’ve been bed ridden for over a year now and I’ve never been quite so sick (with the exception of my recovery from my 1st transplant in which I was in a coma for weeks and had to learn to sit up and walk all over again).

    I’m so happy I found your blog!

    1. Bill Varner

      Thanks for your note, Becca, and I’m glad you found the site useful. It’s interesting to hear your perspective on the transplant experience both before and after the implementation of the MELD score approach. I find it hard to believe that in 2009 the best option for me is to stop taking my medication…all so that I can play the “MELD game” and boost my competitiveness on the list.

      Sorry to hear that you’re sick now. Although I’m not bedridden, I think I can sympathize with some of the things you’re experiencing. Keep me up-to-date about your progress and please feel free to drop me a note from time to time.

  3. Becca

    my blog has my health updates on it. In order to keep my family and friends in the know I send out periodical emails on my health status. I post these emails on my blog. I try to write other blogs, too, but sometimes it’s just health updates for awhile…

  4. Becca

    oh, and to access my blog you can just click my name or go to http://beccaspeace32.blogspot.com

  5. Amanda

    Your are good hands at MCV’s Hume-Lee Transplant Center. My husband Danny had a liver transplant on March 27, 2009 there. We just saw Dr. Fisher last tuesday for 6 month checkup and it went well.

    Danny is VA patient and they only have 5 transplant hospitals across the country. We are from Oklahoma City but I hope to move to the Richmond area in the next couple years.

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