Information

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

Discussion Forum

Liver Transplant News

Loading… Loading feed

Comment Wall

Comment

You need to be a member of Liver Transplants to add comments!

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
 

Members (330)

 
 
 

Photos

Loading…
  • Add Photos
  • View All

Latest Activity

Alicia winter left a comment for Karen Weddick
"Hey how are you doing? How's your week going and thank you for add! Alicia"
1 hour ago
Alicia winter and Karen Weddick are now friends
1 hour ago
Fay is now a member of TransplantCafe.com - The Gift of eLife!
11 hours ago
Lili Feldman commented on Lili Feldman's group The Funny Bone
"I'm mailing you a white flag."
11 hours ago
Karen Weddick commented on Lili Feldman's group The Funny Bone
"Brilliant idea David!"
11 hours ago
Transplant Links Community posted a group
Thumbnail

New kidney - new life

For those people who have received a kidney transplant and it has turned their life around. Please share how your kidney transplant (recent or now) has made a difference to your life and those around you.See More
16 hours ago
David Goodman replied to Walter s's discussion what anxiety meds have you used after transplant ?
"What A. Front said..."
22 hours ago
David Goodman commented on Lili Feldman's group The Funny Bone
"I've torn out my alarm system & d-registered from the NeighborhoodWatch. I've got two Pakistani flags raised in my front garden, one at eachcorner and the black flag of ISIS in the center. The local police, State Police, FBI…"
23 hours ago
David Goodman commented on Lili Feldman's group The Funny Bone
"Frank always looked on the bright side. He would constantly irritate hisfriends with his eternal optimism.No matter how horrible the circumstance, he would always reply, "It couldhave been worse."To cure him of his annoying habit, his…"
yesterday
David Goodman commented on Lili Feldman's group The Funny Bone
"Cute, Karen!"
yesterday
A. Front replied to Walter s's discussion what anxiety meds have you used after transplant ?
"I've found things like yoga and meditation to be better for anxiety than drugs but. . . if cannabis is legal in your state, you could go to a dispensary and tell them that you are specifically looking for something to help with anxiety, My…"
yesterday
Alicia winter is now a member of TransplantCafe.com - The Gift of eLife!
Tuesday
Ali Barton left a comment for David Goodman
"Thanks for the sweet message David~ You are also an inspiration!! :)"
Tuesday
Ali Barton and David Goodman are now friends
Tuesday
Lili Feldman commented on Lili Feldman's group The Funny Bone
"I'll keep that in mind. Thanks David"
Tuesday
David Goodman commented on Lili Feldman's group The Funny Bone
" Old Butch    Fred was in the fertilized egg business. He had several hundred young pullets,' and ten roosters to fertilize the eggs.   He kept records, and any rooster not performing went into the soup pot and was…"
Tuesday

quick links!

 follow transplant cafe:

Find us on Facebook Follow us on Twitter Subscribe to TransplantCafe

Meet Members by Transplant Type

Heart Kidney
Liver Single Lung
Double Lung Pancreas
Intestinal Bone Marrow
Tissue Kidney / Pancreas
Other Transplant

Badge

Loading…

© 2014   Created by TransplantCafe.com.

Badges  |  Report an Issue  |  Terms of Service