I would first like to welcome you to the forum. I am so sorry that you are watching a loved one go through this dreaded disease. My husband has HepC/cirrhosis of the liverr and is currently on the waiting list. Was or is he a drinker?? Alcohol with liverr disease is an absolute no-no! Depending on the transplant center/ region you are in, your son may or may not have to document his attendance with AA. I can only speak to this issue from personal experience with my husband. He is a recovering acloholic. However, since he had been attending AA meetings and been soberr for quite some time, they did not ask for documentation, but during his evaluation he did meet with the psychiatrist and they did discuss his sobriety. In order for them to consider putting anyone on a list, they do have to be sober, for (I think) at least 6 months to one year. Know that on this forum you are surrounded by a very loving, supportive community. I can tell you to read, read, read and be VERY informed and ask ALOT of questions with the doctors!!!
You take care of yourself
Hello, Deb, and welcome to the forum! It's been an unusually busy Sat. here, I see, so you've gotten quite a few replies. If your son wasn't an alcoholic or heavy drinker on a regular basis, I don't know that the documented 6-month rule would apply. How long has it been since he had a drink of alcohol?
The Transplant Center where he will receive treatment is the one to ask about their specific requirements. I have hep C and had liver cancer, but was never a candidate for transplant. Therefore, I'm not as knowledgeable as some here who have gone through it or have loved ones on the waiting list now. I'm a sober alcoholic with nearly 23 years of continuous sobriety, thanks to AA. So the question of drinking never even came up. Same with drug use, whose history for me is even older. The bottom line is that they want to be as sure as possible that the person who gets a transplant is not going to drink again. Of course there is never a guarantee. Some centers want documented alcohol counseling through their own psychologist. Someone who has been drinking heavily recently is not physically a good candidate for the serious surgery of transplant.
Rick, good to see you here! Someone really should have told you about their requirements! I think your therapist dropped the ball there.
Deb, as you can see, the people here are both knowledgeable and supportive, so I'm glad you found us!
Deb, now I have a better understanding of your son's situation. Thank you for the additional info. You might want to read the thread Stages of Liver Disease. It breaks it down into subgroups. Scroll down on the first page and you will find it. End Stage Liver Disease is an umbrella classification. Also, everyone is different. A person may have some of the characteristics of 2 subgroups. Usually one does not have all of the symptoms listed for any one subgroup. I'm not explaining this very well, but if you look at the subject you will see what I mean.
With liver disease, everyone is an individual. My experience is probably different from your son's, whose disease differs from someone else's, and so on. This is why it is difficult to give pragmatic answers as to what will happen next, how long someone has left to live, etc. Your son does have youth on his side.
I have learned so much myself from this forum. As I said, my experience is different from someone else's and there are several kinds of liver disease with different symptoms, treatments, and outcomes.
Our hope is to bring all this information together in one place, and especially to support one another.
Deb, my understanding is that there is a national list of people waiting for a transplant (United Network of Organ Sharing or UNOS), not individual lists by transplant centers...though I'm sure they keep a list, also. Who gets organs depends on their MELD score (Model for End-Stage Liver Disease), which is calculated using the combined values of the creatinine, total bilirubin, and INR. This score does not stay static, but goes up and down depending on treatments, complications, and how the patient is doing. The higher the MELD score, the higher up on the transplant list a patient will be. Some transplant centers, like Mayo, have a very short wait time for a liver, due to using live organ transplants and also livers that may not be optimal. For example, I have hep C, so they might use a liver with hep C if I were going to die very soon without a transplant. Not all centers do this.
I hope this answers some of your questions.
No question is dumb. I’m sorry you are in a position to have to ask. Watching someone go through this is heart wrenching. It pains me to see how many people are out there suffering with ESLD.
I hope to answer some of your questions. To find new centers, you may have to do some Google searches. I Googled, “first liver transplant Ohio” for you and learned that Allegheny General Hospital (Pittsburgh, PA) performed it’s first liver transplant November 1, 2007. The surgery was performed by Thomas V. Cacciarelli, M.D.,director of Liver Transplantation at AGH, and Dr. Roh. Pittsburgh is 135 miles from Cleveland (drive time=2 hrs, 22 mins)
Here is the weblink . . . http://www.wpahs.org/agh/news/index.cfm?mode=view&article=22
Cleveland Clinic performed it’s first liver transplant November 8, 1984. They’ve performed over 1,100 transplants to date.
Here is the weblink . . .
University Hospital of Cincinnati Transplant Center was established in 1986. They’ve performed more than 500 liver transplants to date.
These are just some examples. It’s easy to find the data. It’s time consuming to sift through it all.
In regards to your question regarding liver allocation, I found a very interesting article on this subject. location, location, location. . . it’s a harsh reality. Dr. Gregory Rutecki posted an article on The Center for Bioethics that would probably answer all of your questions on this subject.
Would you believe that 60% of liver offers are turned down? It's true. There are so many factors to be considered. It's not just about blood type. A patient may be the sickest, but may be so sick he/she is unable to withstand the surgery. Is there a surgeon available to perform the surgery? They may be tied up in surgery and unable to perform the transplant. I don't know about the rest of the centers, but at Florida Hospital, the surgeons actually retrieve the organ and return it to the hosptial themselves. The sooner the liver is transplanted after it is retrieved, the better. I could go on and on, but the point is that there are a multitude of things that must fall into place before a transplant is performed. The organs are in short supply and if a center doesn't believe they can pull everything together, they will decline the organ. In the event an organ is denied, they must notify the patient at the top of their list.
I hope you find this helpful. I wish I had more time to devote to this forum. I’ve returned to work full time and I’m still taking care of Harvey. I’ll drop in when I can. I wish you the very best.
You are the backbone of this forum and you threw me a life preserver. I’m afraid there is an endless parade of individuals just like me looking for someone just like you. I’m just so glad I found you when I did. I’m committed to doing whatever I can to help out.