Organ Transplants Support Group

Have you tried transplancafe.com I think you would enjoythis sight very up to date andactive new news alomst everyday. The people I have encountered are really kind. I have also noticed a few members from here.

Tricia

Wonderful question, I have been wondering the same thing. Thanks Tricia!!!

Many of us belong to more than one forum. I like this one because of the online journal. I also belong to kidneyspace and kidneyfun

I joined this site, stumbled on it by accident... recently because I have a new dx of MS, noticed the Celiac Group, joined that bc I have had that for 19 years and thought I could offer some good advice... My best friend had a liver transplant about 4.3 years ago, and while she was hanging out with me and checking out the blogs on MS, we decided to see out of 500+ groups what was out there for organ transplant... She is so thrilled to be able to contribute her knowledge that we will set her up with her own account... We'll spread the word at the clinic in Rochester next time we're out there and see if we can't get more awareness of all the sites! We need to stick together! Peace*

I noticed that also for quite some time since my own liver transplant over twelve years ago... However, this place seems like there's quite a few which is a good thing!

Respectfully,
Henry

I'm new here. My fiance just had a liver transplant on Octoer 10th. He is doing fantastic--we were out with friends for dinner on Saturday October 17--1 week from his transplant! He could have come home Wednesday but we opted to stay because they put him on Lasix which, in the past, has affected his kidneys. The doctor said all the edema from the liver issue is gone and the edema he now is experiencing in his feet and lower calves is from lymphatic issues caused by damage during the military, just like his liver (Hep C contracted while in the military 30 years ago). I am looking for information and what to expect now with the transplant.

Hello klga!

I am so happy for you and your husband!!!
The biggest concern for the first year is helping his body to slowly accept the new liver more and more and to heal the wounds...

There is always the risk of organ rejection but, they seem to get it under control much better these days than ever before...
The other ocncern is the possibility of CMV otherwise known as CytoMeglaVirus becoming active if he indeed is a carrier which more htna 80% of the public is but, because of a healthy immune system, the virus is dormant and that it why one needs to be concerned since your husband's and anyone else who is on immumno-suppressant drugs is more thna likely going to have the CMV virus become active which can be potentially fatal if not treated in time so, the first sign of yourhusband starts to feel ill and weak and starts to run a low grade fever, get him to the ER because if it's not rejection then more than likely, it'll be CMV acting up in your husband's body! So you need to seek treatment for it immediately if the symptoms become apparent.

However, if your husband doesn't have the virus then, you're in the clear! if you have any questions, please feel free to contact me and ask away because your husband is going to go through some frightening as well as enlightening changes that is for sure, so knowing what, why and how will most definitely be helpful to you in the long run.

Respectfully,
Henry

Thanks Henry, that is why I am here. Jim has HepC so we are praying that it doesn't become "active" and attack his new liver. I'm interested in learning everything I can from those that have walked in his shoes. That is how we got through from diagnosis to now with some semblance of sanity. Because of the Cirrhosis site I knew the questions to ask, things to look for and records to keep. Jim's doctors were shocked and amazed at what I knew and the questions I asked, and more so the understanding I had of what they were saying. Because of DS we didn't feel TOTALLY helpless, and I want to continue in that vein now that he has his new liver.

Thank you for sharing your experiences. Talk away because, at this point, I don't know the questions to ask.

Thanks.

Karen

Well,
I'm currently on a long term low dose regimen of combo theapy that has been proven to help keep the virus at bay so far with many other patients besides myself being included in the mix so far, and it's of course only a stop gap measure until the newer drugs come out which should be available for our pot-transplant populations in roughly 2 years or less... So even if your husband does have a return of the virus, the stop gap measures do work in keeping the virus at bay and hopefully the wait for better drugs will not end up being delayed because of some unforeseen setbacks which so far, haven't reared their ugly head yet! I'm still hopeful that there will come a day soon in which I too can finally boast how I'm also now virus free too because I've been through more hell than most as has your husband so, we definitely deserve more than what we've been able to cope with so far.

I mean, i have nothing against the folks that boast and shout out loud when they clear and have been so for some time now, but sometimes I find myself saying to myself: "Why not me God??? I've been through so much more than they have!" And then I open up the bible and read the book of Jobe which almost always settles me down after wards and puts things in their proper perspective.

Oh well, here I go rambling again so, I'll just end it here with praying to God that he may continue to bless your husband as well as you and the rest of your family who have endured a lot and are about to endure some more so, stay strong and expect setbacks because you'll be better able to handle them!

Respectfully,
Henry

I have been searching for many years for a support group, and found none. I have tried starting some, but no one joins. Maybe we can get together and form one.
I have had a transplant in Mar of 07. It is hard to finmd people to talk to about transplant issues. I talk to people and they say "i know how you feel." My comment to them "when was your transplant?" I hope there is a support group where there is others that have "been there done that."