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Tiffara - The Tiffany and Tara Living Donor Liver Transplant Journey

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My sister, Tiffany, has sclerosing cholangitis, it’s a liver disease where the bile ducts harden and eventually leads to liver failure. They don’t know what causes it but she needs a liver transplant. Given the cadaveric organ shortage I got screened to be a live donor. Surgeons will take 60-70% of my liver and transplant it in Tiffany. Both livers should grow back within several weeks. There is obviously the chance for complications from infections, to bile leakages, to liver failure, and even death, for both of us. They estimate 8-12 weeks before I will be back to work and about 6 months or so before I feel like I did pre-surgery. After surgery both of us will be very tired and in some pain. They have to cut through both of our abdominal muscles and use retractors to get our ribs out of the way. There will also be rather large scars for both of us. Not sure what the recovery time is for Tiffany, but the doctors say the recipient usually feels a lot better right away since they’ve been sick for so long.

Tiffany was diagnosed in 2009 and was doing pretty good for a while. Last year (2013) doctors tried a procedure to go in and open her bile ducts, they repeated the procedure this past fall/winter. Tiffany is also on immunosuppressants but because of that she is susceptible to infections and has ended up in the hospital three times since the beginning of the year. First time with an infection, second time with legionella, and the third time with fluid in her lung. The trick here is that she only has a certain window of opportunity to do a partial transplant, if she gets too sick her body won’t regenerate the other part of the liver and she would need a full liver from a cadaver. The screening process for me was quite lengthy and for good reason – there is no physical benefit for me to have a major surgery.

As far as the screening process – it started with a four hour education session back in March 2014. I met with the transplant coordinator and one of the transplant surgeons. Then several weeks later I went back for the social/psychological evaluation. They want to make sure a donor can mentally, emotionally, and financially handle it and that the donor is not being coerced into it. That day I met with a nurse practitioner, financial person, donor advocate, social worker, psychiatrist, nutritionist, and a hepatologist. After they had a committee meeting and gave the all clear, I went back for the medical testing. The only issue that was raised was that my husband and I had been trying for over a year to get pregnant – with no luck. And if I go through with this surgery I would have to wait a year to try to get pregnant and possibly miss my opportunity. Not really a big deal when the alternative is possibly losing my sister.

As far as the medical testing – they did a MRI and CT scan with contrast. They also did a stress echo. They then sent the scans to Germany to have a Mevis model created so they can determine if they can make a safe cut in my liver and leave enough for me as well as provide enough for Tiffany. That took several weeks. Then on Friday, June 13, 2014 the transplant doctors and hepatologist met and decided I was a match! NY then mandates a two week reflection period for the donor to make sure they want to go forward. Then under normal circumstances the surgery is scheduled, but it didn’t go that way for me and Tiffany. Instead we were told Strong Memorial didn’t have the three qualified surgeons necessary for the surgery. Turned out Strong had been working to hire a third full time surgeon but had not found one yet.

Of course the story doesn’t end there – luckily Tiffany has a friend that knows a doctor at Westchester Medical Center and that doctor talked to the transplant surgeons there. They agreed to take the case and as of June 30, 2014 we have been working with Westchester Medical. Westchester reviewed the records for both of us from Rochester and did some testing of their own. Just this past Wednesday (7/23/14) they did a transjugular liver biopsy on me. Now we just wait to hear the results, and hopefully they too feel I’m a match and we do the surgery soon!

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Tara & Tiffany