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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

Shortage of donors a challenge for liver transplants in PHL - GMA News


Shortage of donors a challenge for liver transplants in PHL
GMA News
While the Philippines has the capacity to do complex surgeries, including liver transplantation, the lack of financial assistance and organ donor shortage have prevented more multiple organ and liver transplants from being performed in the country, the ...

Yoder joins critique of liver transplant reform - Topeka Capital Journal


The Denver Channel

Yoder joins critique of liver transplant reform
Topeka Capital Journal
U.S. Rep. Kevin Yoder offered opposition Monday to a recommended change to rules governing allocation of transplant livers to broaden geographic boundaries guiding the sharing of organs. A committee of the United Network for Organ Sharing, a nonprofit ...
Legislators raise concerns about revamping liver allocations
Liver battle pits Midwest, South against California, New York
Organ redistricting proposal could affect Colorado liver patients

Volunteers raising money for local teen's liver transplant - MyFoxOrlando.com


Volunteers raising money for local teen's liver transplant
MyFoxOrlando.com
ORLANDO, Fla. (WOFL FOX 35 ORLANDO) - With the cost of a transplant often exceeding $500,000, many transplant families are unable to shoulder the financial burden of such a procedure. The Children's Organ Transplant Association is a national charity ...

How more than 160 liver patients have been barred from transplant operations ... - Daily Mail


Daily Mail

How more than 160 liver patients have been barred from transplant operations ...
Daily Mail
Hundreds of alcoholics have been refused liver transplants in the past five years because they have not been able to stop drinking. More than 160 patients with severe alcohol-induced liver disease have been denied a transplant, including a teenager at ...
Eight Birmingham patients denied liver transplants over alcohol binge fears ...
Killed by drink: patients who cannot quit

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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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Stefan posted a discussion

Hello, I am new here

Hi, My wife had a double lung transplant, 16 years ago this Sunday. At the age of 27, dying from CF, she was gifted life by the transplant team at MGH in Boston, and two non-related living donors. We've been together for 8 years and I play both roles of husband and caregiver.Although her sweet 16 "Lungaversary" is Sunday, on Monday she goes for a major surgery (not pulmonary related). I sure am nervous. I've witnessed her resilience, self efficacy and recovery from multiple pneumonias, illnesses and painful secondary ailments caused by medications. But this total open abdominal procedure will really immobilize her and expose her to infection (inpatient or out). I'm scared, but can't fully express it because she is scared and seeks emotional comfort and strength from me. Every day I "should" be grateful, not worrying.I apologize for writing so much on my first post. I hope to find some support and insight here.StefanSee More
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"My wife is a double lung transplant of 15 years"
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Jeff Clardy posted a discussion

Surgery after transplant

I recently injured my hand and now have to have surgery on it to repair it. They are going to be putting me out for the surgery. Now grant it, I, on a regular basis go to my transplant center for different procedures(ie;allomap, biopsies, heart caths, etc) and feel completely at ease in doing so, it has been 4.5 years since my heart transplant, Yet I have found myself with a lot of anxiety going into this surgery, one that they are putting me under, two, it is not at my transplant center but at another hospital. It is really weird that i seem to have more anxiety concerning this surgery then I did about my transplant. The faith I have been granted affords me to have confidence in my eternal destiny to be with Christ and that is what/and has guided me through my entire transplant journey. Can anybody shed some light on their experience they have had with other surgeries following transplant. With a grateful heart, JeffSee More
yesterday
Karen Harrill replied to Phil Keyes's discussion Post transplant blues
"Hi Phil, Before transplant I had hepatic encephalopathy which my gastroenterologists treated with medication. My reflexes were slow and my judgement was often faulty. Until the fall before my following Spring transplant these episodes were few. They…"
Tuesday
Karen Harrill replied to Bornali's discussion In distress ..may be just need to hang on in the group Acute Liver Failure Transplants
"Hi there! I notice people are not that active on this page. I had acute liver failure, had a transplant in 2011. I take 3mg of Prograf only. I also, on the advice of my Mayo Clinic transplant surgeons take the vitamins Calcium, E and magnesium. I…"
Tuesday
Karen Harrill added a discussion to the group Acute Liver Failure Transplants
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My Acute Liver Failure was the result of Hepatitis C contracted during an emergency C-section in1978!

I lived with stage 4 (end stage) liver disease for 15 years. The fall of 2010 was the beginning of a rapid decline. I received a transplant in May of 2011. As you know a transplant gives you a new life but does not cure the hepatitis C, it begins its damage of your new liver immediately. Thanks to the incredible staff of the Mayo Clinic Liver Department and new drugs Solvaldi and Olysio I have been virus free for over 5 months and hope that my 6 month blood test will be still be negative. Interferon and ribovarin would show no virus and then a month or so it would rear it's ugly head. I had no side effects from the two new drugs. These drugs are very very expensive but I was fortunate that Mayo knew where to go for help with these two drugs whose combined costs is $58,000 per month for 3 months. $174,000.
Tuesday
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Acute Liver Failure Transplants

A group for those of us who had a liver transplant due to acute / fulminate liver failure. Here we can discuss our experience with this unexpected form of organ transplant including psychologically, physically and all else that goes with it.
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