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Liver Transplant- the complete picture

zekeb
Posts: 4
Joined: Jun 2011

I have a primary tumor and cirrhosis, have had two CE treatments, and have recently been placed on the transplant waiting list. My blood type is B, so the list is not that long (but of course the donor population is not that large). My transplant team(Thomas Jefferson University Hospital in Philadelphia) put me in touch with a recent recipient, and I found it to be very helpful. However, his experience almost sounded too rosy. I'm looking for feedback from recipients about the "not so great" parts of their experience, so that I can get a more complete picture of what I might expect. Also, is it likely that I will have to become very ill before getting to the top of the list. With the shortage of donors, it would seem that relatively healthy people (like me - at least for now) won't get to the top until the situation becomes dire. My meld score is currently 22, and I don't expect any phone calls for at least 9 months, but I've been told that I've probably got 12-18 months to live without a transplant. Anyone out there who has gone down a similar track? Thanks for your feedback!!

slg
Posts: 200
Joined: Jan 2010

Congratulations on actually getting on the transplant list!!! I will share our condensed version of my husband's story. We are fighting to get him back on the list in Kansas. This Sept. will mark the 2 year anniversary since he was diagnosed with Liver Cancer. It has been a long long road. He orignially was not eligible for transplant and has been on Nexavar, had 3 TACE procedures, a Y-90 and next week will undergo a RFA (Radio Frequency Ablation) on one last tumor in order to put him back in criteria. He was listed in Kansas in December but was bumped down on the list and then in January they found new tumors.
When my husband became eligible in September 2010 we started attending a transplant support group. I highly recommend you doing that if it is available in your area. There are usually people who are committed to going to share their stories and it is amazing to see people who have been living 19, 10, 7 and 3 years since transplant. And even better people who just had their transplants days or weeks earlier sitting there looking great!!!
Don't lose hope. Take good care of yourself while you wait and be compliant. Listen to your doctors and keep researching, reading and listening to other people.
I am committed to seeing my husband through to transplant and being able to celebrate our 40th anniversary next year and walking our youngest daughter down the isle next August!!!
Best of luck!!!

zekeb
Posts: 4
Joined: Jun 2011

Sig- Thanks for your message last July. Since then I have received my transplant and am doing well. I'm even able to get back onto the golf course! I hope your husband made it to the list and is hanging in there. Best of luck to you both!

Cassandra74
Posts: 1
Joined: Aug 2012

Zekeb, I'm happy to hear that you got your liver and doing well. I have been diagnosed with Hepatic Adenomatosis. I've been placed on the list (Meld is 6). I'm told I'm healthy, but in time....my tumors will turn to cancer. There is a good chance that one (of the many) could start to bleed at any time. I decided to join this site in order to get some feedback from others like me. My transplant team asked for extra points in order to get my score @ about a 22, but I was denied.....whoa!!! They think my surgeon can go in and resect my liver.. cutting off the biggest tumors and still leave enough liver to sustain me.... Not sure which is worse.. I guess I'm just needing to network and find out what would be best for my situation.... Thanks for sharing!!!

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