Liver Transplants

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Comment by Laura 12 hours ago

I am 4 years post transplant due to Congenital Hepatic Fibrosis and having a benign tumour. I have recently been struggling with the pain - both physically and emotionally - of needing to have a second PTC tube inserted into my bile duct (the first one was put in a year ago and was in for about 5 months). I had been dealing with ongoing bouts of cholangitis for the last 2+ years and, after countless trips to the ER, have been given an ongoing prescription for Cipro to take whenever the symptoms reoccur.
I can't help but get depressed every now and then. Hopefully this time the PTC tube works.

I am just really glad that this group is here for me to talk and share my story with other people who I can relate to and who can understand how I may feel...and I hope that I can help people get through any problems they are struggling with. Thanks :)

Comment by NICHOLAS MARINO on June 16, 2009 at 7:33am

Bobbie, I am doing everything that is recomended by transplant staff, and more but I refuse to take any drug that has repeadly not had positive results for the majority. Side effects are horrible and overall it has proven in the last 10yrs, these HCV drugs are very seldom effective. I feel that new drugs are becoming available because 65% of liver transplants are caused by this infection, In America cost is predominatly the motive and it is much cheaper to develop a cure, This is my opionion and the same opionion of many,many doctors. Good Luck, Nick

Comment by bobbie c on June 15, 2009 at 5:15pm

nick, are you doing anything else as an alternative to interferon?

Comment by NICHOLAS MARINO on June 15, 2009 at 1:37pm

Mark, You have the rite attitude, Ireally dont know how sick evryone got that replies to this site,but for myself I cherish everyday being able to maintain a normal lifestyle. I totally agree with you I WILL NEVER GIVE UP. Good Luck, Nick

Comment by Mark E on June 14, 2009 at 8:54pm

my hepc returned 4 months post transplant-been on peg and rivo ever since with a 1month break over xmas due to bad reactions- viral loads exploded docs put me back on now vl is pretty low again. but unless I become and remain a sustained responder (not likely) doc said my new liver will be done in abut 5 years- I hear there is a new protease inhibitor drug that may be promising- I hope I can extend my 5yrs with that if all else fails- I will never give up!

Comment by NICHOLAS MARINO on June 14, 2009 at 1:03pm

Iam am pretty much in same situation, I found out in 9-2007 I was HCV positive and only due to the fact that I could not breathe I would of never been taken toER, where I spent 3wks inICU to get the fluid out of my chest. I am95% sure I contracted this by blood transfusion in 1982. Well I am 1yr post now and feel great,but hepatologist has ordered biopsy for monday. I will not take interferon cause the risks far outway the benefits, that is my opioion and my decision. Every day is very special to me and I am grateful to live a normal life, Keep your head up. Good Luck, Nick

Comment by bobbie c on June 4, 2009 at 4:43pm

hi sylvia, i'm in the same boat. post transpant a year this month and the hep c has attacked already. i'm having another biopsy next month to see if it is any worse and if it is. they'll put me on the interferon. ugh... not looking forward to that

Comment by sylvia edwards on June 4, 2009 at 2:55pm

I AM 4 + YEARS OUT .... LIVER TRANS AT DUKE UNIVERSITY MEDICAL CENTER FEB 17, 2005 ....HAPPY TO BE ALIVE ... SOME PARTS OF RECOVERY ARE ROUGH....BUT, YA JUST HAVE TO MAKE UP YOUR MIND AND "DO IT" ....SYLVIA (FRANKLIN NC) I AM FIGHTING HEP C THAT HAS ATTACKED OF COURSE MY TRANSPLANTED LIVER...CONTRACTED HEP C IN MID 70'S WE THINK WHEN I WORKED IN AN EMER ROOM.....WE STRUGGLE ON, BUT WITH FOLKS TO SHARE EXPERIENCES WITH, AND TO VENT TO, WE CAN ALL MAKE IT ....

Comment by Mark E on May 27, 2009 at 12:34am

hey tinye, I love the web too, I learned how to be a transplant patient, then I learned how to be a transplant surgeon! lol first 6 months everything I read scared the heck outta me, I'm a worrier by nature- after 1yr I figured I had a shot! but every day is a gift,- even if its only a pair of socks!

Comment by tinye on May 26, 2009 at 6:49pm

Nick,
I'm ten years out from my first transplant, and I love the web. It actually eases my anxiety. I read some of the stuff that is published and just laugh and laugh.
e

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