Monday, December 3, 2012

January 30, 2012 - Looking for a liver

On January 30, 2012, Mom and I met with Dr. O of Liver Consultants of Texas (associated with Baylor Hospital) to see about getting Mom evaluated for a domino liver transplant. Dr. O was familiar with domino transplants and with the role of the liver in fibrinogen amyloidosis, so I didn't need to explain any of that to her. After going over Mom's medical history and why we were there, Dr. O told us something we were totally not expecting to hear. She said Baylor has a hard cutoff of 40% kidney function to qualify for a liver only transplant. The primary reason for that is the anti-rejection medicine that is required after a liver transplant is very hard on the kidneys, so there is too much risk of damaging the kidneys and forcing a patient onto dialysis, which leads to a poor prognosis after a liver transplant. She also said Mom's current pulmonary condition, having quit smoking only a couple of years ago, would make any organ transplant very risky for her. She said the actual surgery for a liver transplant was similar to running a marathon in terms of the stress on other organs.

We were totally surprised when we heard this 40% figure, especially since Mom had submitted an application in October of 2010 for a liver-kidney transplant and at that time she was told her kidney function was not low enough to qualify for a transplant. We mentioned the previous transplant application to Dr. O and she said she would look into it. The way we left it was that she would present Mom's case to the transplant committee later that week and then call me with their recommendation. As I understood it, the three possible decisions from the transplant committee would be: A) Rejected as a transplant candidate, B) Accepted and proceed with a full medical evaluation, or C) Tentative approval, but proceed with a mini-evaluation and make a decision based on that. So we did hold out a little hope that she might get the tentative approval.

Dr. O called me later that week after presenting Mom's case to the transplant committee. Unfortunately she was rejected as a candidate for a liver-only transplant, but the committee did recommend that she apply for a kidney transplant. Dr. O also found out that the transplant application we submitted in October of 2010, which we thought was for a liver + kidney transplant, was evaluated as if it were for just a kidney transplant. That would explain the rejection at that time, since her kidney function was definitely above 20% toward the end of 2010.

Needless to say, we were both really bummed out over this turn of events. I did a lot of second-guessing and asking myself how we could have proceeded differently from the beginning, given what we know now. To say I have run through a lot of what-if scenarios would be an understatement. In retrospect, I don't think we had the diagnosis of fibrinogen amyloidosis soon enough to get a liver-only transplant, as Mom's kidney function was already below 40% at that time. But the reality is we'll never know what would have happened if we had started pursuing a liver-only transplant in the summer of 2010.

The medical literature at that time had no reports of liver-only transplants to treat fibrinogen amyloidosis, although some articles have proposed that a liver transplant may be curative. (After all, the first one was Cathy Tidwell's in July of 2010.) Even as of this writing I am only aware of one mention of Cathy's liver-only transplant in published medical literature (one paragraph in this article from June of 2012: But it is certainly being discussed among the amyloidosis community, at least in the UK (see this presentation from February of 2012, especially at the 12:27 mark:

With a liver transplant apparently ruled out, we'll see what happens with another kidney transplant application. We know a new kidney will eventually become affected by amyloidosis again if the liver is still producing amyloids, but the time frame for that varies considerably from patient to patient, so that still seems like it's worth pursuing.

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