What to expect

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ESLD66
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/7/2008 5:05 PM (GMT -7)   
Hello, I've been reading so many posts, and it looks like there is a great deal of support on this forum, which I'm extremley grateful for. Plus it is so helpful to know that I'm not the only one dealing with the effects of a family member going thru esld.  My story is long, but I'll try to keep it short.
 
My husband had bleeding varices 8 years ago and saw a gi dr. who told him he had alcholic cirrohosis and would need to quit drinking and get on a liver transplant list. At the time they hospitalized him overnight, prescribed propanayl, nitrates, and spironlactone.  His belly water did go down, and he seemed to get better.  He quit drinking for about 18 months, but started again.
 
Fast forward to early spring of this year-he was still drinking and no amount of pleading, scolding, etc. would help (as with any alcoholic) and began to lay around a lot more-he seemed lethargic.  He own(ed) his own business, and started working less and less and was laying around more and more.  He went to see his primary care dr. who took him off a blood pressure med, did blood work, noticed his cratinine was elevated, and had him make an appt. with a kidney dr.  His abdomen was also getting larger with more fluid (ascites) and I told him I thought it was his liver again-he needed to quit drinking and see his gi dr.  It wasn't until a neighbor who just retired from nursing was waiting for me to get home from work one evening late in August that he finally accepted it was his liver.  She convinced him he needed to go to the er for his edema and while there the er dr. said he thought it was his liver after hearing his medical history.
 
He saw his gi dr., and it was confirmed.  He has had 4 paracentesis so far, been to the er 3 times-the first was for possible spon. bacterial peritonitis, and the last 2 times was for low sodium, high ammonia.  He is suffering from encephalopathy (taking lactulose), isn't currently taking any diruetics because of his low sodium, and is pretty sick.  The gi dr. was able to schedule an appointment with a hepatologist an hour away to evaluated for a liver transplant.  That is where my question comes in...what should we expect from this first visit? 
 
I know that they probably won't list him until after 6 months of being alcohol free (which will be March of 09) and will probably want him to go to AA (which he's pretty ill with the enceph.)  I actually stuck his numbers in a MELD calculator online and he's at 19.  I know this can vary from blood test to blood test.  I guess I'm wondering if they'll want additional tests, etc.  Any input would be appreciated.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/7/2008 5:54 PM (GMT -7)   

ESLD66, welcome to the forum.  I'm sure you will get some great responses.  There is going to be MUCH testing in your husband's future, that you can count on.

Since I haven't needed a transplant (YET!), I will leave that for others to answer.  It does seem that your husband finally understands how ill he is.  The fact that he stopped drinking is HUGE.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/7/2008 6:03 PM (GMT -7)   
Hello Esld66 and welcome to HealingWell. I am so sorry that you and your husband are going through this. As you already know it's one heck of a disease and filled with a few ups and a lot of downs.

Not sure where you are from .........each transplant hospitals are a bit different in the things that they require. But yes if they decide to evaluate him there's going to be a lot more tests. CT scan, possible MRI, EKG, more blood work, amongst others.

My husband was going for testing or doctor appointments almost weekly there for a while. Your head is going to spin trying to get him to all the appointments.
The evaluation it self can be a grueling 2 day event at the transplant hospital. After all the testing is complete...they have you both seeing their hepatologist, surgeon, a financial person and couple of others .......depending on his case. After the 2 day event his case will go before the transplant committee and they will decide if he's a good candidate for a transplant. I can almost guarantee that AA will be a requirement encephalopathy or no encephalopathy.

We are here anytime you need us.........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.

Post Edited (Pink Grandma) : 11/8/2008 4:07:25 PM (GMT-7)


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/8/2008 5:45 AM (GMT -7)   
Esld66, Just wanted to welcome you to the forum. I'm sorry that you and your husband are dealing with this disease. My husband hasn't been placed on the transplant list yet so I'm sorry that I can't answer your question. We were told his meld score has to reach 15 and then they would start the workup. His has been around 10 since he was diagnosed over two years ago. Encephalopathy is his main problem. He was told that in order to be considered for the list he needs to lose weight and quit smoking. He actually quit smoking right before they told him he needed too. I agree with Pink Grandma regarding AA. We have another member who's husband was very ill, but was still required to attend AA meetings. You and your husband will be in my prayers.


Butterflythree
 
There is always hope!

Post Edited (Butterflythree) : 11/10/2008 6:34:50 PM (GMT-7)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/8/2008 2:31 PM (GMT -7)   
PG, you typed AKG in your response.  Did you mean EKG?  Just making sure.

Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/8/2008 4:06 PM (GMT -7)   
LOL..........yes............I kept looking at it and thinking it was wrong but I couldn't put my finger on it..........thanks.........that's what I get for posting while I am sick.......sorry everyone............
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.


ESLD66
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/10/2008 11:42 AM (GMT -7)   
Thanks for the info. My head is already spinning with all the appointments/procedures he has had so far. Fortuanately there are 2 couples in the small town we live in who have been so great at taking turns bringing him into town for his dr. appointments and blood tests. We live 25+ miles away from his drs., so it gets to be a real pain.

I pretty much figured he would have to attend AA. I'm not sure how I'll get that arranged-he can barely get out of bed, and when he does, he sits in his chair and falls asleep. Sometimes it all seems so overwhelming, and I get angry because he brought this on himself and now my children and I have to come along for the an unwanted ride.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/10/2008 12:06 PM (GMT -7)   

ESLD, as a sober member of AA for 22 years, I can tell you that I have seen people sleep in the meetings.  More often, I've seen people court-ordered there who are resistent to any of the suggested 12 steps, and are just "putting in time" until they can fulfill the requirement.  The chairperson will sign a paper for your hubby, stating that he was there each time he goes.  You need to find out if there is a required number of meetings per week that your husband has to attend during those 6 mos.  Small towns sometimes only have them once a week, while cities like I live in have meetings all over town every day and evening.  Also see if they will provide you with a "sign in" paper for the meetings.  BTW, the chairperson won't sign it until after the meeting is over.  smilewinkgrin    Hopefully, with continued medical treatment, your hubby will open up his eyes and ears to what is going on, even if he doesn't actively participate in discussions.

Your anger and resentment are normal.  Perhaps there is an Al-Anon meeting nearby that you could attend yourself to help you with these feelings.

 


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/10/2008 6:53 PM (GMT -7)   
ESLD66, I have felt that anger myself. But I know that my husband didn't want to do this to himself. I think it was just something he could never figure out how to control. Drinking had always been a big part of his life. He was raised with an alcoholic father. Six out of eight children turned out to be alcoholics or drug abusers. I feel sad sometimes when I look back at our lives together. Because I expected it to turn out so differently. I never gave up on the idea of him being able to overcome the addiction. The drinking had actually dwindle down and things were getting better before he was diagnosed with cirrhosis. Then encephalopathy took over, and while he doesn't drink anymore I am still competing with this disease to keep him. He is rarely ever the man I know, but I am very thankful for the times that he is himself. Sometimes he is sad about what he has done to himself and his family and wishes he could change it all. Then I get sad listening to him talk about his regrets and tell him he did the best he could. You can't change yesterday but you can tomorrow. I don't blame you for not wanting to go for this ride. There are alot of days that I cry and say to myself "I don't want to do this anymore". Usually after a good cry I feel better.
Butterflythree
 
There is always hope!


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 11/10/2008 9:17 PM (GMT -7)   
ESLD 66....first of all, welcome to the forum! I am so sorry you are having to deal with this horrible disease. My husband is currently on the transplant list, and he went through evaluation last January. I can tell you what our experience was, but I am not sure which transplant center you will be using, so please do mark my word as final. In our area, the evaluation was a week long process. We had to go down to the hospital for testing every day, "classes" done by the pre transplant coordinators and the post transplant coordinators, psych evaluation, full blood workups, cardio appointments, glofil kidney testing, financial counseling, meeting with the hepatologist and also a surgeon on the transplant team, ct scans, mri, and several others I cannot think of off the top of my head. As grueling as it was, we looked at it as the beginning of a step in a new direction for us. It is true that he will have to be alchohol free, smoke free, etc and they may even make him sign a "contract" of sorts. On the AA thing.....he really needs to go to the meetings, and also for all the right reasons. He needs to be able to work his program, or the program will not work for him. As far as the encephalopathy goes, the lactulose really helps with that, and he needs to take it (and sometimes increase the dosage if he's not "pooping" enough) on a regular basis. Once all the tests are completed at the transplant evaluation, then it will go to committee, and they usually have 10 days afte reaching the decision to accept him on the list or not to notify you in writing.

I do get angry myself and that is perfectly normal. I get angry at this disease on a regular basis, and do miss my husband. He's not the person he normally is and it's sad to watch him go through this. You take care of yourself and hang in there!

Hope I have shed some light on the process and hope I did not overwhelm you too much. You will find that this forum is very helpful, educational and has some wonderful supportive people here......

Mary
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