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Liver Transplants

This is a group for all people who have had liver transplants. Feel free to say how long you have been a recipient and what medication you are on. Some doctors hope to have their patients off all medications, any thoughts?

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Comment by Christopher Allard on March 18, 2010 at 4:25pm
Beth, I read that you have just switched to Rapamune. I was on Prograf & Cellcept immediately after my transplant. I had to switch the Prograf to Cyclosporine because I was experiencing a toxicity and I had migraines 24/7 for over a month as a result. Since my transplant (Dec 25, 2008) I have had pretty severe pain in my feet/achilles tendon areas, knees and elbows. My transplant team thought switching me to Rapamune might help. I stopped the Cyclosporine in November 2009 and started with the Rap. My steady dose was 3mg a day. I'm sure your doctor told you there is a good chance that your cholesterol might jump up from the Rap. This week I received a call from my transplant co-ordinator that my triglycerides were 1500!!! Needless to say, tomorrow I have to go back to Cyclosporine. She told me the doctors on the transplant team all felt that even putting me on a statin wouldn't be enough to get those trigylcerides down to a safe level. Also, the Rap didn't provide me with the bewildering pain in my body, so I'm not disappointed having to go back to Cyclosporine.

Good luck with the Rapamune and keep an eye on those triglycerides! :-)
Comment by A. Front on March 18, 2010 at 4:18pm
I spent most my life believing I was healthy.
It wasn't until in 2005 when my belly swelled up from ascites that I was diagnosed with hepatitis C and decompensated cirrhosis. Up until then I had few symptoms and what ones I had came on very slowly.

I treated for Hep C, relapsed and my condition worsened.

Without health insurance I thought I had no option for a transplant in the U.S. Therefore last April I had a live liver transplant in Taiwan with my daughter as my donor.

When I went into surgery I had no thoughts of anything. There was no fear.
( I'd already dealt internally with the possibility of dying months earlier. I didn't think my time had come:)

The aftercare was difficult because of cultural and language problems but the surgery was great.
My operation was complicated due to a completely occluded ( blocked) portal vein. It had to be reconstructed and I had a first of its kind successful surgery.

The only problem I've had since is from my bile duct. I've had 2 ERCP's and will have another next week to remove the stent.
Currently I take one mg prograf, twice daily.

My energy has returned and in general I feel great.
Its something I never in a million years would have thought could have happened to me.
Comment by Brad shwidock on March 18, 2010 at 3:56pm
I had PSC for 20 years. The first 16 were relatively uneventful. When things started going south they went fast. My MELD went as high as 32 with a bilirubin up to 28. The last few months before the transplant were awful but just like you said, when I woke up, still filled with tubes and IVs, my first thought was how great I felt. Its so weird and its something only someone who has been there can understand.
Comment by Beth Kasulaitis on March 18, 2010 at 12:15pm
Brad, My liver disease was a result of surgery I had when I was 16 years old. I had intestinal surgery at Shands Teaching Hospital in Gainesville, FL. They had said that kidney disease/complications were prevelant with this type of surgery and there was a possibility of liver complications. I was 50 when I was diagnosed, it took 34 years, however, I had been telling my primary care doc I was sick and he didn't believe me, for over 2 years. Before the transplant I did go into kidney failure, but did not get a liver/kidney, the docs at Emory felt like my kidney function would return/improve after transplant, and it did. It's just that after 1 year the prograff had taken it's toll. That's why the rapamune. Kidneys are improving and the liver seems to like the change as well. How about your experience? was yours PSC?
Comment by Brad shwidock on March 17, 2010 at 7:34pm
Beth,
Did you have PSC or other auto immune liver disease? The description of your pre and post transplant experience sounds familiar.
Comment by Beth Kasulaitis on March 17, 2010 at 6:15pm
I am a year and a half post transplant and have had no rejection issues, I did have a bout of shingles and from that was taken off everything but prograff. Just recently I have switched over to rapamune because my kidneys had taken all the prograff they could handle. So now, I'm 5mg rapamune once a day .. that's the only txp med I take now. I feel somewhat liberated!! I am now the coordinator of the liver mentor group at Emory University Hospital in Atlanta. It has been so rewarding for me. I knew in the beginning I wanted to do something to give back. When I woke up from surgery, even with all the tubes and machines I knew I was better. My MELD was 38 the day of transplant. Getting involved as a mentor has been part of the way I try to honor my donor.
Comment by sylvia edwards on March 17, 2010 at 12:37pm
my good friend christy rec'd her 3rd liver transplant last week and is doing nicely....she has two girls 12 and 9, and a great hubby and host of friends...im glad to report she is doing well at Duke Univ Med Cntr....she is young, 30 ish....
Comment by Lee Rivera on March 17, 2010 at 11:04am
13 years post transplant. On 2 mg Prograf twice a day. Have not had any problem once I left the xplant center at University Hospital, San Antonio, TX. AM 68 years. Have lived to see my grandkids! First had problem in 1993 with a major bleed. started throwing up blood when I came home from work. If anyone wants to read more of my story just ask. Just don't want to bore anyone.
Comment by Bobbiejo Winfrey on February 26, 2010 at 6:40am
Congratulations Burnie. Wow, 15 years. I am only a little more than four years beyond my transplant. I agree with Bonnie. Hearing from people like you who have done so well is certainly encouraging. May you continue to do well, and may life bring you many new blessings.
Comment by bobbie c on February 26, 2010 at 3:26am
congrats burnie. so nice to hear stories like that. makes me miss the bay area.. you give newbies hope
 

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Thanks for the sweet welcome to this site! Im in the insurance phase , testing which my insurance paid for about $30,00 worth of testing. Can I ask how long did you have to wait once you were on the …

Thanks for the sweet welcome to this site!Im in the insurance phase , testing which my insurance paid for about $30,00 worth of testing.Can I ask how long did you have to wait once you were on the list?I have hepatic encephalopathy and have been to hospital twice in less than 6 months. The first visit I was pretty much out of my head. Finally adjusting the lactulose and x drug . Everyone I came in contact with was just rubbing me the wrong way.Second visit finally got the lactulose working right. Thanks to Dr. Panel one of the transplant doctors in Baptist Hospital Oklahoma City.See More
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Prem Dayal replied to Prem Dayal's discussion Having a single Peg of Whiskey after liver transplant, will it kill me?
"Hi thanks for the advise, Currently I am taking Prograf 1mg twice a day, also I had my medical test done last week and everything was normal except indirect bilirubin, which was 1.57 (should be max 0.80). Also the cause of my liver failure was…"
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A. Front replied to Prem Dayal's discussion Having a single Peg of Whiskey after liver transplant, will it kill me?
"A little bit of alcohol now and then will not kill you however, I don't know what medications you take. You should check and see if any say not to take with alcohol. If you have hep C or any other kind of hepatitis,stay away from…"
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Liver Transplants

This is a group for all people who have had liver transplants. Feel free to say how long you have been a recipient and what medication you are on. Some doctors hope to have their patients off all medications, any thoughts?
Dec 15

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