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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Latest Activity: Apr 8

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Comment by Bobbiejo Winfrey on December 26, 2013 at 6:19pm

Dear Lee,

It's wonderful to hear you are doing so well especially during the holidays! I am glad that your gift has lasted so long, and I hope that this is just the beginning of its time, and may more blessings be coming. May you and everyone else have a very Happy New Year! 

Comment by Lee Rivera on December 26, 2013 at 12:15pm

Almost 17 years post transplant (liver).  Feb 1997.  On 1 mg prograf twice a day.  No problems, all levels normal.  

Comment by Stu L on October 29, 2013 at 7:32pm

Jan,  good luck with that.  I am blessed that I never really had any bad side effects, so now I have been undetected for 2 years and liver enzymes have been in normal range so life is good!  .  

Comment by Carlos on October 28, 2013 at 9:34pm

Note to honor Lou Reed, noted musician who died subsequent to a liver transplant last May.  RIP

Comment by Jan Ward on October 28, 2013 at 6:42pm

@Stu L: Before my Cancer and TP I had been in every trial that came along - hated em all and nothing even touched it...and I'm thanking the powers in the universe that this one finally arrived because my new liver has started going downhill...

Comment by Stu L on October 28, 2013 at 6:32pm

Great news,  I wish it was out when I went through treatment.  Keep it up 

Comment by Peter james goodman on October 28, 2013 at 5:01pm

Hello Tx family~ pleased to hear from all of you!  Hugs and love to all of you!

Comment by Bobbiejo Winfrey on October 28, 2013 at 4:51pm

How marvelous! I am delighted that you are having such great results! May the viral load continue its downward spiral all the way to zero, I hope. You are wished blessings beyond count.

Comment by Jan Ward on October 27, 2013 at 8:40pm

Hey Folks - a little good news. The gilead trials seems to be amazing. After one week of my involvement my viral load dropped from 2,300,000 to 671 (no zeroes). Liver numbers dropped into normal range for the first time in 40 years (except for the first few months after transplant). And very light side effects.

Y'all should check with your docs...

Comment by Don on October 27, 2013 at 5:26pm
Hi all, I have a question for the Group, and hopefully someone here can share a personal experience, (with "Liver Infarction") and the results of there own event, which (according to my Doctors / and the net) only effects about 1%-2% of liver transplant recipients, and (to the best of my knowledge) 80% happen within the fist 3 months post trx. .... I'm 7 years out, and the results are spotty / unavailable for a Liver Infarction cause / effects and the results once discovered, or treatment. My health has been medically uneventful / stable for all these years, till the first week of July this year (2013), with the exception of rejection, per my blood #'s, at three month post Trx,, (back in 2006) and required the normal protocol of high levels of Steroid treatments, and followed with a successful restart of daily meds. It was short lived, and within days (and with no real physical, or mental change noted during this event) I was back to daily life.
So... to my knowledge, very few of us in the Liver Trx population has had to endure medical treatment for a "Liver Infarction", and I'm looking for ANY treatment, or outcomes anyone here might shed some light on, to better understand where I might be in my own event, or can expect for final outcome.
 (here is a brief on the disorder - there are other articles out there, but this is a place to start)
I was treated for the Infarction, with home, self administered medication Cetrafaxine (SP) via a pic line in my chest, directly into my heart, once a day, for 3 weeks.(finished 7 weeks ago) and for reference, my per-Infarction body weight was 185-190# (now, today about 150#) my energy level has been, and is still now only about %60 - %70 max., of what if was, and I have absolutely no appetite what so ever - - None !..... Although I do eat about 1/2 of what I once did, by volume in normal conditions.(I no longer have taste)
Also I'll note: I've had five (5) one week stays in the hospital since July with direct related, and varying effects of this disorder. I've been home now for a little over a week, and see the head of Solid Organ Trx at Strong Memorial, NY, next week to discuss my status.
If anyone has had a personal experience with this disorder - I would like thank you in advance for sharing anything significant you can offer (favorable, or unfavorable).

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Clare mcgee replied to Andrea Gaskin's discussion Anyone out there had a Liver Transplant and now need a Kidney due to prograft?
"Hi Andrea, You have certainly had a rough time on top of the usual transplant roller coaster. Unfortunately the drugs we rely on bring its own problems. I am very pleased you have a supportive family to keep you strong. You are young & strong in…"
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Andrea Gaskin replied to Andrea Gaskin's discussion Anyone out there had a Liver Transplant and now need a Kidney due to prograft?
"Hi Clare, I started off taking problably around 9mg 2x a day of prograft and 1000mg of Cellcept 2x a day. It was eventually tapered down to 4mg then in Feb down to 2mg and cellcept to 500mg 2x a day. My dose has fluctuated quite a bit in the last 2…"
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Clare mcgee replied to Andrea Gaskin's discussion Anyone out there had a Liver Transplant and now need a Kidney due to prograft?
"Hi Andrea, Unfortunately This is more common than you may think . Not my personal experience granted but have heard & read of this happening. Out of curiosity what were your Prograf levels over the 2 yr period? & doses? As this plays a…"
Brian Primack replied to Phil Keyes's discussion Post transplant blues
"Ipad my heart transplant 8 months ago and I also am on 2x 1500mg Cellcept, 12.5 of prednisone and prograf. I don't feel very good either. I keep wondering when I am going to feel better?"
Brian Primack liked Donnia's group Prednisone Sucks :)
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Andrea Gaskin posted a discussion

Anyone out there had a Liver Transplant and now need a Kidney due to prograft?

I had my liver transplant March 2012 and now last month almost 2 yrs after my liver transplant, I'm in kidnwy failure and on dialysis 3x a week. I am currently being evauated for a kidney transplant at MUSC in Charleston, SC. I hate dialysis! I need my life back!See More
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