son and ESLD

Hi, my name is Debbie, my son Scott 36 yrs. old has end stage liver disease,( I sound like I'm at a A.A. meeting)  it makes me cry to even see it in print. I'm not dealing with this very well, but have been reading all your posts for over an hr. now. And I've learned alot (some things I would rather not know) but needed to. I just wanted to say the support is great. As I've found out, my friends and family are uncomfortable talking to me about it. So i'm feeling a bit loney these days. Hes 1 of 4 children, but hes my best friend, and I just can't believe this is happening to him, its breaking my heart. Hes been hospitalized twice in 4 months, and is to meet with the transplant team in a few weeks, he was never told he had to document any alcohol usage through A.A. (of course he hasn't drank anything) but is this true? And if so why wasn't he told this? He won't last another 6 months without a transplant. So my heart sank when I read this. I just want to say thank you, for being here.

Hello Debbie and welcome to HealingWell. I am so sorry that your son has this disease. My son is 34 and it's one of my biggest fears .....that he will develop cirrhosis. He does not want to listen to mom. So all I can do is pray for him.

As far as I know they need documentation. But you will have to ask the transplant hospital to make sure. But to be on the safe side.... have him start AA now to get a head start. He needs to have them sign a form with each date that he attends. My husband's was.... so many meetings........not he had to go for 6 months. I believe he only had to attend like 20-25 meetings......and he could go a couple of times each and every day to get those 20 25 meetings in. Or go once a week or watch ever. He chose to go as often a possible to get them in quicker......But every transplant hospital has their own criteria to meet to make the list. Call the hospital and ask to talk to the transplant coordinator about it............

Good luck.........thoughts and prayers.........

Thank you all so much for replying, and so soon. He wasn't a alcoholic, he would have drinks with friends or watching a movie, the liver specialist doesn't think its related to drinking and asked me if he had high iron counts as a child, I do remember when he was 5 he had to have additional blood work, but can't remember why. He did drink so they have to treat him with the 6 month rule.  His color was changing and he was tired so he went to the dr. for bloodwork and tested positive for mono, and that was the beginning of our nightmare, he never seemed to get better, then they did the ultra sound which showed a fatty liver. All the while he kept getting more yellow, his beautiful blue eyes turned green, and now people stare at him. Than the hospital visits began, right now, he sleeps alot, is unable to sit for very long, so I doubt he could even attend A.A. meetings. does he miss drinking? No, right now all he craves is a deli pickle, but of course thats out of the question also.  He lives in the Detroit area, so will be going to Henry Ford. I live in Ohio 4 hrs away, but I manage to see him every 2 weeks, and talk to him everyday. I feel so helpless, and my sister-in-law has hinted that I should be doing something, but I don't know what to do. This is so unfair. But again thank you all, your doing a good thing..........

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!

Hugs,

Connie

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.

Penny, we appreciate you so much here.  I don't know how on earth you do it all.  Kudos to you, my friend! 

 

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.

 

Love ya!