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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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Liver Transplant News

HANYS-Supported Letter Calls for Change in Liver Transplant Allocation System - Healthcare Association of New York State


HANYS-Supported Letter Calls for Change in Liver Transplant Allocation System
Healthcare Association of New York State
Representatives Eliot Engel (D-NY) and Devin Nunes (R-CA) are circulating a letter in support of a concept paper recently released by the United Network for Organ Sharing (UNOS) that would change the nation's system for liver transplant allocation.

Southerners may have to wait longer for liver transplant - WYFF Greenville


WYFF Greenville

Southerners may have to wait longer for liver transplant
WYFF Greenville
GREENVILLE COUNTY, S.C. —A WYFF News 4 Investigates analysis found people in the Carolinas and Georgia typically wait between six months and two years for a new liver, but in places like California and the Northeast, people can wait as long as five ...

Mother waits for liver transplant - Valdosta Daily Times


Valdosta Daily Times

Mother waits for liver transplant
Valdosta Daily Times
As doctors explained to her, this is a condition where the body attacks the liver. The diagnosis led to trips to Emory Healthcare University. Every six months, Grisson has to undergo MRI and labs, yet her condition continued to worsen. Her skin began ...

High Post-Liver Transplant Survival Rates for People With HIV - AIDSmeds.com HIV/AIDS Treatment News


High Post-Liver Transplant Survival Rates for People With HIV
AIDSmeds.com HIV/AIDS Treatment News
HIV-positive people who have liver transplants because of hepatocellular carcinoma (HCC, the most common form of liver cancer) have high survival rates, HIVandHepatitis.com reports. Researchers conducted a retrospective analysis of the benefits of ...

Liver Transplant Promising for HIV+ Cancer Patients - MedPage Today


Liver Transplant Promising for HIV+ Cancer Patients
MedPage Today
BOSTON -- Liver transplant is the best treatment option for people with HIV and hepatocellular carcinoma, a researcher said here. In a retrospective analysis, survival was markedly better for people who had a transplant rather than other potentially ...

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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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HDHONEY replied to Frank Colangelo's discussion Vomiting and Diarrhoea after being exposed to chemicals
"Frank  r u having these problems just when working.  I also have had a liver transplant. Weird that stuff is not agreeing with u. hope u can get answers, sure its not ur med "
5 hours ago
Frank Colangelo joined Gabrielle's group
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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?
yesterday
Karen Weddick left a comment for Michael
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yesterday
Karen Weddick left a comment for Kristi Ide
"Hi Kristi: I’d like to welcome you to the Transplant Café. You are now a member of a warm, friendly, supportive, caring, understanding, sensitive and informative site. If you have any questions please don’t hesitate to ask and…"
yesterday
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Thursday
Frank Colangelo posted a discussion

Vomiting and Diarrhoea after being exposed to chemicals

Hello AllJust under three years I had a liver transplant due to cirrohossis and Hep C.  I am back at work but seem to experience vomiting and diarrhoea if I have been exposed to chemicals of any sort.  Understanding fertilser and blood and bone for gardens is a no no for me. My medical team cannot give me any answers and I am wondering if anybody has experienced the same symptoms.  The episodes seem to last up to four to five hours at a time and leaves me very fatigued and wash out.  Hoping someone can give me some answers.Kind regardsFrankSee More
Thursday
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Gene Cost posted a discussion

Working after Transplant

Hello to everyone,My name is Gene and I was transplanted almost 3 years ago. I suffered from liver failure as a result of Hep C. I am 59 years old now. I suffered a torn rotator cuff as a result of my positioning during my transplant and it took some time to recover from that. I did not have any surgery I simply learned to live with it. I also incurred steroid induced diabetes as a result of the transplant and now have a fair amount of neuropathy in my feet. I have found that I fatigue much easier than I once did. My doctor has concluded that I have also suffered some cognitive impairment and as a result of my illness and I have been declared fully disabled. After a year of rehabilitation I returned to work part time delivering auto parts. I have been working for 18 months now. By federal law I can earn $1070/month and continue to receive disability. I find it difficult to live on my part time wages however I have determined that in order to justify going to work full time I would…See More
Wednesday
TransplantCafe.com commented on TransplantCafe.com's blog post Have You Come Up With A Transplant Or Other Medical Idea, Innovation, Or Invention?
"Yep, Dallas Buyers Club is a great story and example for sure! Personally, I'm with you. Professionally, TC couldn't be involved, unfortunately. And it really is unfortunate because it would help so many people. Sort of like organ donation…"
Tuesday
John Presley Robertson commented on TransplantCafe.com's blog post Have You Come Up With A Transplant Or Other Medical Idea, Innovation, Or Invention?
"Nelson, I understand the laws, but we all know a lot of meds are discarded by patients that don't need them anymore. I don't expect the pharmacies to give it away but there must be away for transplant recipients to do something. Remember…"
Tuesday
TransplantCafe.com commented on TransplantCafe.com's blog post Have You Come Up With A Transplant Or Other Medical Idea, Innovation, Or Invention?
"Hi John, I think that would be a great service for the transplant community and other patients too. However, I don't think the laws allow this, unfortunately. You're right about there being a great need for a program like this for…"
Monday
Caring 4 Carrie posted a status
"How Are Diabetics Affected By Hypoglycemia? Too little food or skipping a meal; too much insulin or diabetes pills; more active than usual."
Monday
John Presley Robertson commented on TransplantCafe.com's blog post Have You Come Up With A Transplant Or Other Medical Idea, Innovation, Or Invention?
"Why don't we develop a program where taransplant patients that have changed meds can share it with those that need that med. and make it free."
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