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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?

Members: 330
Latest Activity: Aug 28

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Liver Transplant News

'Liver Journey' Has Happy Ending - Boise Weekly


Boise Weekly

'Liver Journey' Has Happy Ending
Boise Weekly
After undergoing a liver transplant surgery in August, Patrick Casey spent a lot of time watching TV. One night, he was channel surfing when something caught his eye: a show on tiny houses, which are sometimes smaller than 300 square feet. "I thought ...

Teen waiting in Durham needs double lung and liver transplant - WTVD-TV


Teen waiting in Durham needs double lung and liver transplant
WTVD-TV
A Virginia girl and her family picked up and left their home there to come to Duke University Hospital in Durham to wait on life-saving organ transplants. Her case is considered somewhat rare, but her family remains hopeful that a suitable match will ...

Warren resident recalls vital link in receiving liver transplant - New Jersey Hills


Warren resident recalls vital link in receiving liver transplant
New Jersey Hills
WARREN TWP. – If he had not been across the street from the hospital, he would not have lived. That is why Brian Vitale, a Warren resident since 1973 who received a liver transplant last December, decided to build a house. Or more to the point, help to ...

Mississauga girl lucky to find liver donor, recovering from re-transplant - Brampton Guardian


Mississauga girl lucky to find liver donor, recovering from re-transplant
Brampton Guardian
“We feel that a second liver transplant using a live donor would be extraordinary difficult,” said Dr. Les Lilly, medical director of Liver Transplantation at the University of Health Network. “For all technical reasons that the liver needs to work ...

Liver transplant reallocation plan on hold - KHI News Service


Liver transplant reallocation plan on hold
KHI News Service
TOPEKA — A plan to redistribute donor livers from areas where donor numbers are higher, like Kansas City and the South, to organ-needy coastal areas is on hold after protests from members of Congress representing the areas that would have seen ...

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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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The Month Of September is 'National Hispanic Heritage Month.'

According to the National Diabetes Educational Program, one in ten Hispanics over the age of 20 have been diagnosed with Diabetes. However, small changes in lifestyle living, e.g., healthier eating & exercising are key. Nugget: Exam=Prevention.See More
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Parent of B posted a discussion

Cardiac biopsy - how often?

Hi,First post folks. I'll begin with quick background: My 15-year old daughter had a heart transplant 6 months ago after having severe dilated cardiomyopathy with left ventricular noncompaction (now known to be a result of a genetic mutation original to her). Anyway, transplant was at the highly acclaimed Columbia/NewYork-Presbyterian Hospital - to which we moved for waiting for the heart, transplant, and follow-up care. Now, 6 months after transplant, we moved back to our home. Our medical team has a different protocol for checking for organ rejection.Whereas NYP's protocol is cardiac biopsy every month for first year, every 2 months for second year, and every 3 months for third year, our hospital's protocol moves to every 3 months after 6 months, then every 6 months after a year and every year after 3. Bottom line- much fewer cardiac biopsies.I'm wondering if you know the different protocols in checking for solid organ rejection / heart - and how they differ from different medical…See More
Sep 19

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