Monday, July 11, 2005

Whose Liver Is It Anyway?

Hi folks - Yes, the blog is still active. I've just been away from it - for all the right reasons. Things are going great health-wise as the 7-month mark with my new liver, Dora, approaches. We've been away a little bit - cycling to the fogged-in Montauk Point lighthouse - once a weezing, gruelling endeavor - was startlingly easy with my lighter body and strong workout regime. Truth be told, I've spent more time on the couch rooting for Lance Armstrong over morning coffee with the Outdoor Life Network than I have on the bike these last few days - but I'll get there. (No excuses Monday - it's an off-day for the Tour de France).

Big news is I expect to get latest blood work results soon and be cleared to return to work later this month. It will be a weird undertaking - my office calendar will read July...2004.

I picked up the Sunday New York Times magazine today, expecting to read the cover story about President Bashar al-Assad of Syria and I ended up reading instead about the liver I turned down back on Dec. 17.

The Times has a compelling story ''Will Any Organ Do?'' by Gretchen Reynolds examining the fact that organ transplants are now, more often than not, done using what were previously considered ''non-traditional'' organs, rather than perfect specimens, because of the critical shortage.
The intriguing story is available on the web (free registration required - and why aren't you reading the NYT already, anyway?!) at

The story hits on several tough issues facing transplant surgeons - should they use ''non-pristine'' organs from ex-drug users, donors who were morbidly obese, or beyond what was considered an acceptable age. And - more importantly - how much information should they give their critically ill patients about where the organ comes from in allowing them to decide if they want to accept the non-traditional organ?

I've always known and freely admitted than I am extremely fortunate and blessed in getting my liver transplant - given the numbers of people in my situation who die regularly on the waiting list. The article reminds my further that I was in the most capable of hands with the New York University Medical Center staff headed up by Dr. Lewis Teperman.
Dr. Teperman comes across in the story as the compassionate clear-thinking straight shooter that he is.
As you may recall, on Friday Dec. 17, I was roused from a nap in the later afternoon by a doctor whom I hadn't really had contact with to that point, Dr. Thomas Diflo. He surprised me by offering me a non-traditional liver, from an 80-year-old donor and said he need to know within the hour if I would accept it. There was an increased risk of rejection with an older liver, he told me. I respectfully asked if I could instead speak with Dr. Teperman, who I had many prior dealings with, and soon he called on the phone. In the meantime, I scrambled to discuss the issue with Nancy, who was already making her way home to get the kids off to see Santa Claus at the local firehouse after spending the morning by my bedside.
In a bizarre - now comical scene - as I sat up in a chair near at the nurses' station frantically dialing the telephone, a patch covering a hole where they had been draining fluid from my belly popped loose and I began to leak a yellow liquid on the floor. As I finally got Nancy on the phone, as the deadline approached, a neighbor walked in on her to deliver a Frosty the Snowman ice cream cake, which in no time was creating its own puddle, melting and dripping onto our floor, just as I was 'melting' on the hospital floor.
Dr. Teperman's call came; I broke off from Nancy temporarily.
''What would you do if you were me?'' I asked, unable to get my head around the idea that an 80-year-old liver was a good fit for me, at only 46 years old.
''I can't tell you that,'' Dr. Teperman replied, but quickly hit the important points. An older liver tends to be fatty and the fatty livers may carry as much as 10% extra chance of rejection. Given that any organ transplant carries with it an immediate 25% chance or rejection, the odds on this being a bad fit jumped to more than 1-in-3 based on the information I was given. Further, Dr. Teperman said, fatty livers tend to work better in people with known causes for their liver disease - mine is, was and always will be cryptogenic - like some 20% of all hepatitis cases - they don't know the cause. They just know it wasn't Hep A, B, C, E or any of the other well known strains. Further, Dr. Teperman said, if I decided to turn it down and wait for another liver to match my O+ blood type, that decision wouldn't bump me down the list. His staff would continue to work tirelessly to find me a liver. My MELD score (a calculation of how serious my illness was) at the time was 36 - at a score of 40, it is estimated that you have no more than 6 months to live without a transplant.
Based on all that information, I decided to pass on the 80-year-old liver on the grounds that with so few livers available, I didn't want to take one that wasn't a great fit for me but that was a better fit for someone else. If I took it - and my body rejected it - then that liver would be trashed - no good to anyone - and what would become of me?
In my warped sense of humor - and supreme confidence that things would work out - neither of which failed me during these darkest of dark days, I told Nancy that I had asked myself the question: If I pass on this liver and I die as a result, can I live with that decision? I asked myself that, and answered: yes. Nancy - tentatively - understood and after I told her that I felt so incredibly relieved and blessed in my decision - went off in a surreal fog to take the kids to see Santa.
I informed the doctors and nurses that I was going to pass on the 80-year-old liver - and let my chips ride, as it were.
Later that night, a man in his late 50s came in with his wife and college-age son and was placed in the bed across the room. From back and forth comments behind the curtain it became clear that this man was going to receive the liver I had passed on. Again, I felt a bathing of relief and a sense of peace with myself - as though I was getting confirmation from the big guy himself that everything was going to be all right. Nancy and I later learned that the man who got the 80-year-old liver had an issue of recurring cancer and his tumor was within a fraction of a centimeter of the size that would prevent a transplant. He's now doing well...
The 80-year-old liver was the talk of the floor, even new nurses knew I turned it down. What I didn't ask at the time was whether they had a donor that old before; it seemed they hadn't. The NYT article says ''livers, for some reason, don't age at the same rate as their original owners. Sixty-or 70-year-old livers can be in fine shape.'' Dr. Teperman's quoted as saying as recently as 1989, he wrote a paper studying the transplantation of organs from older patients - but at that time ''we meant someone over 60. That was considered really, really old.''
Two days after turning down the 80-year-old liver - the life-saving organ we had been on a single-minded quest to acquire in the last manic month - I awoke from a horrific nightmare early on Sunday Dec. 19. The nurse, Kim, who came to comfort me beamed that she was going to let me sleep for a couple more hours, but since I was awake, she broke the news that they had a liver for me - from a 53-year-old woman - and that doctors were harvesting the organs at another hospital and would be prepping me later that day for surgery. When a resident doctor came in later to confirm, he wouldn't give any further information on the donor - as per the rules - but he did express that this organ seemed to be the perfect fit for me and there wasn't any reason to believe that this isn't the liver that I'm meant to have.
Later that day, I took off my wedding ring for the first time since Nancy slipped on my finger 13 years ago and drifted off into the surgical haze (after an extensive talk with the anaesthesiologist about oil prices) - it's been a success story ever since.
Doctors had regularly told me that they needed to get me a liver ASAP, that I wasn't living the hospital without a new liver, etc. - but I didn't know at the time their assessment that I probably wouldn't have made it to see Christmas without the transplant. It still wouldn't have changed my decision about the 80-year-old liver.
Who knows, maybe the liver I have now was really the right one for me ONLY because of matching blood type and the fact that my fuse was burning rapidly. Dora sure feels like the right liver - I still know nothing about the donor, but hope that the family, whom I've written to through proper hospital channels, will one day share some information or met with us.
Dr. Teperman made it a point to say he was impressed by how we handled the situation and I thank him for that.
I'm glad he and his fellow doctors and staff are my team and I'm proud that he's such a straight shooter in such a magnificent, mysterious and magical field of medicine.

The whole discussion of changing criteria, etc. does nothing to change the fundamental truth - that there's a critical shortage of organ donors - and that organ and tissue donations do save lives.

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