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debkale2
New Member


Date Joined Apr 2009
Total Posts : 16
   Posted 4/4/2009 5:32 PM (GMT -7)   
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.

mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 4/4/2009 6:53 PM (GMT -7)   
Hi Debbie and I would have to agree with you. I felt the same way when I found Healing Well.

I don't have any answers for you but I can sympathize with you, to an extent, of the pain and sadness you feel.

I use this site to help me cope and seek answers. This is a great group!

Keep your head up and your strength up for him. He will find his strength in your eyes. Don't lose that sight.

Margaret

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/4/2009 7:39 PM (GMT -7)   
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.........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 4/4/2009 7:41 PM (GMT -7)   

Debbie,

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

Mer


debkale2
New Member


Date Joined Apr 2009
Total Posts : 16
   Posted 4/4/2009 8:51 PM (GMT -7)   
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..........

debkale2
New Member


Date Joined Apr 2009
Total Posts : 16
   Posted 4/4/2009 9:05 PM (GMT -7)   
Omg Rick, how horrible, I will bring this to his attention tomorrow, so he can follow up on it, Hes been seeing his reg. Dr. every 2 weeks hes done bloodwork of course, can't they go by that? Wouldn't the liver specialist have known this?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/4/2009 9:42 PM (GMT -7)   

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

 

 


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


debkale2
New Member


Date Joined Apr 2009
Total Posts : 16
   Posted 4/5/2009 6:14 AM (GMT -7)   
Hello hep, I just want to say, this is a wonderful thing you all are doing.....I was looking for a low salt diet when I found this place. I've learned more here than from all the jibber that comes from the drs. They do considered him a heavy drinker and he started when he was 15, so they took that into consideration as well. He also takes meds for gout, which he has had for the last 10 yrs. His Dr. said is very bad for the liver, kinda like bleach. The last time he drank was in August (9 months ago) when he had the ultra sound that showed a fatty liver. He quit, no problem and doesn't miss it. If you have any history of drinking, they will focus on that. Just like smoking, if you do, they blame any illness on it. And I don't understand, they still give him this pill, they've cut it in half, but i think he'd be better off taking his chances of a flare up then to continue it. Its hard to have hope when I see him getting worse. They call this "end stage" I know of a woman also is known to have "end stage" she was on the transplant list 4 yrs. ago, got removed for drinking, and shes still drinking! Shes not yellow, has no tremors, no signs at all shes even sick, this is where I get confused. Well I could go on & on, but I have to focus on everyday things, again..... thank you all!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/5/2009 11:43 AM (GMT -7)   

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.

 


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


debkale2
New Member


Date Joined Apr 2009
Total Posts : 16
   Posted 4/5/2009 6:18 PM (GMT -7)   
Omg....... I just read pscwife"s story, so touching, am so happy for her & Harvey. Such a love story. I did see what you mean. I just get so frustrated because I hear all these different stories of "end stage" I learn more everyday thats for sure. She mentions, centers that are trying to establish a liver transplant program are easier to get one from, but how would you search and find them? Also, he is in the same region as Cleveland Clinic, I do know they do twice as many transplants as Henry Ford, so what does that mean, the people on their list are more likely to get the liver should one become available? I hope these aren't dumb questions, but like I said all this is new to me, I'm trying to learn. Debbie

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/5/2009 8:39 PM (GMT -7)   

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.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/7/2009 8:08 PM (GMT -7)   

 

Hey Debbie,

 

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 . . .

http://my.clevelandclinic.org/transplant/services/liver/default.aspx

 

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.

Here is the weblink . . .

http://www.cbhd.org/resources/healthcare/rutecki_2004-06-25.htm

 

___________________________________________________________

 

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.

 

Penny


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/7/2009 8:17 PM (GMT -7)   
Penny, we appreciate you so much here.  I don't know how on earth you do it all.  Kudos to you, my friend!  :-)
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/7/2009 9:40 PM (GMT -7)   
Ditto Connie, Penny is such an asset to this forum. Penny, I just want to thank you from the bottom of my heart for sharing your knowledge and tips with our members...........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/8/2009 7:07 PM (GMT -7)   

 

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! 


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 4/9/2009 6:13 PM (GMT -7)   
Hi everyone, I just wanted to add that we were told by the transplant coordinator that if my husband were to be listed in different transplant centers in different regions he could possibly get a transplant sooner. We live in Missouri. Barnes and SLU are both transplant centers in Missouri. It would not make a difference if he were listed with both of them, because they are in the same region. But if he were to be listed in Illinois it could help.
Butterflythree
 
There is always hope!

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