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Posted 8/13/2008 11:02 PM (GMT 0)
Hi all,

We just got back from the hospital in San Francisco and found out that my husbands MELD score dropped from 18 to 13, which is good in some respect's but we were told by the doc there that because of my hubby's age (67) that he can only qualify for transplant until the age of 70, the doctor said that if he would sign a waiver to accept a "less than perfect" liver he would move up on the list.  My husband is very ill and is tired of living this way but there would be a chance he could receive a Hep C liver or worse.  Has anyone else been through this???? 

Judith shocked

Posted 8/13/2008 11:11 PM (GMT 0)
I don't know but my thoughts and prayers are with you both

Karen
Posted 8/14/2008 4:13 AM (GMT 0)

Judith, since he qualifies for 3 more years, I would give it more time before accepting a "less than perfect" liver.  I can well understand your husband being tired of feeling ill all the time, but if he can hold on a little longer, maybe he will get a better liver.  Of course, that is just my opinion and he is the one who will have to make the ultimate decision, together with you and his doctor.

Hugs,

Connie

Posted 8/14/2008 4:39 AM (GMT 0)
Judith, My husband is on the list for a less than perfect liver. We call it the seconds list but is actually the B list. They will only transplant a hep c liver to a hep c patient at later ages. We went over all this with the team and there is a certain point where you can only have a pristine liver to fully recover but before that point your body will tolerate a liver from an older person who may have even been on life support for an extended time. We figured at our later stages in life he doesnt need a liver from a 30 yr old auto accident. We researched and asked the risks and life far out weighed some of the minor risks. People on the B list may get offered when meld score is lower than the normal in your area. You really need to agresively ask questions about this.
Sue
Posted 8/14/2008 4:40 AM (GMT 0)
Hi Judith,

I haven't had my transplant yet but have done much research since mine will be coming up soon (I hope). You don't say what caused your husband's liver damage but I can say that in my case, I will accept a less than perfect liver. In my case, I have had Hep A and B, and still have C in my system, so 'diseased but not damaged' livers are acceptable to me.

I spent a long time with the head of the transplant clinic discussing each type of liver that possibly could show up. In the end, the only livers that I would not consider are living donors, due to the poor outcomes on donors; 'very young', which I think should be reserved for very young people; fatty livers and livers with excessive cirrhosis; and those that my team would advise against.

Outcome statistics for 'less than perfect' liver transplants are good overall. But that assumes that you trust your team to pass on those that they believe are substandard. Remember, their clinic funding is dependent on successful transplants. Their statistics are found at UNOS and determine whether the insurance companies and medicare will support them. If you don't trust your team, you should find another clinic. If you are really concerned that time will run out, you may want to consider listing at a clinic with higher organ donation numbers, like in parts of FL. Crass but true: more seniors, more deaths, more donated organs.

I wish you both well, John
Posted 8/14/2008 4:58 PM (GMT 0)

Thank you all for your imput confused and we don't have three years as my husband is actually 67 1/2 now.  He has fatty liver and alcohol cirhossis and has been attending A.A. for the last six month's.  He has an excellent team of doctors here and I have to trust that they wouldn't put him in any danger, my husband has survived prostrate cancer and is a real fighter but this disease has totally done a number on him.  My feeling is that we should go for it even if it only give's him one good year it would be better than this.

 

Judith

Posted 8/15/2008 3:19 AM (GMT 0)
Hello Judith, Boy it must be a hard decision to make. How does you husband feel about it? You too will make the best choice for your husband I am sure. Hang in there.

John have you lined up someone to go online and let us know when you go in for your transplant? You know we want to know. You can't just leave us one day and then the next time tell us you had transplant already. That would be so cold. nono In fact bring them online early so we can get to know them before you go in. I promise we will be on our best behavior.devil

Thoughts and prayers to both of you............ smurf
Posted 8/15/2008 10:55 PM (GMT 0)

Pink Grandma,

He just wants this to be over with, he is so sick confused .  He may also be participating in a encephalopathy study where he will receive free Rifaximin for the duration. 

This is HELL on earth and it breaks my heart to see my man this way.

 

Judith

 

Posted 8/16/2008 2:22 AM (GMT 0)
((((Judith and husband))), This disease is so devastating to the patient and family alike. I wish I had a magic wand so I could make it all go away for everyone. But I don't. shakehead All I have is support to offer you.

The Rifaximin may help his encephalopathy. It sure made a difference with my husband. Once they started him on that he was not bothered with the encephalopathy again. But he still had to take his lactulose though.

Hang in there Judith, I know it is hard. Just take it one day at a time. Get a little break if you can.

You and yours will be in my thoughts and prayers............
Posted 8/16/2008 6:09 AM (GMT 0)
Hi Judith and PG,

Judith - I hope that things will turn around and begin going better with the new drug. I've had both that and Lactulose and it seems that the Rifaximin (Xiafaxin) is better at treating the encephalopathy.

PG - Yes, I will make sure that when and if I get the transplant that a friend checks in with you. I think that is still quite a while away. My MELD is still only 14. When the time comes, Lydia will be my designate. She's way cool, you'll like her.

I don't know what the impact will be, but it seems that I do have a tumor (neck) that does not appear to be benign. The biopsy is on Tuesday if all goes well. The EN&T doctor is pushing this as urgent. His visual is that it appears malignant but easily treatable. I had been hoping for a liver tumor for the extra MELD points that come with that. So I got half my wish -- right outcome, wrong location.

At first I thought he said that I had a tuber. I couldn't imagine a potato growing in me -- it just seemed too healthy.

Be well, John
Posted 8/16/2008 9:37 AM (GMT 0)
John:

???? Is it possible it could be a peanut.

June
Posted 8/16/2008 12:11 PM (GMT 0)
Judith, I am sorry that I can't give you much advice, but I do give you my support. I too wish I could wipe this disease from the face of the earth. It is so ugly and unpredictable. My thoughts and prayers are with you and your husband.
Posted 8/16/2008 12:13 PM (GMT 0)
John, I will pray that all goes well with the biopsy Tuesday and that the doctors are able to treat the tumor successfully.

Take care.
Posted 8/17/2008 10:27 PM (GMT 0)
John, my prayers are with you too!

Judith
Posted 8/18/2008 1:33 AM (GMT 0)

John, I somehow missed your post.  I, too, will be praying for you on Tues.  Good that the doc thinks it's treatable.  It will give you something to focus on besides your liver.  tongue

Hugs,

Connie

Posted 8/18/2008 1:36 AM (GMT 0)
Judith and John my thoughts are with you both.

Judith how are you feeling tonight? We you able to get a little breather?

John, you have one strong constitution. Your ability to offer support to others while you are in the midst of your struggle is awesome. When my husband's liver tumor first showed up his transplant doctors did not think that it was cancer. So ....NOW I am hoping for your doctors to be wrong also.............

Lot's of thoughts and prayers...............
Posted 8/18/2008 1:42 AM (GMT 0)
My prayers with you John and hope that your biopsy is benign

Keep the faith

Karen in Nevada
Posted 8/18/2008 3:11 AM (GMT 0)

John

Have been behind on reading the posts.  I'm sending good vibbs your way.  When all this is over we will take a ride in the GTO and you get to pick the music!!!  That should be interesting.

JoAnn

Posted 8/18/2008 3:46 AM (GMT 0)
Hi all,

I hope that you are all feeling as well as possible -- and all having good news.

Thanks for all of your thoughts and prayers! I'm running off to bed so that I'll be ready for tomorrow. I have to do a pre-op physical and don't know what time they will call for me.

The next two days will be lots of music in the earpieces and a book or two. Waiting for appointments sure eats up the pages. I'm reading Michner's 'The Novel', so that should slow my pace down a bit. The dense books are so much better for waiting.

Know that you all are in my thoughts. Until tomorrow.

Be well, John
Posted 8/19/2008 8:51 PM (GMT 0)
Hi P.G. and thank's for your good thoughts yeah .  We did our 2nd. San Francisco trip yesterday and attended our first group support meeting, most of the people there were post transplant and I was amazed how well they were doing and it did lift my spirits. We go back on Wed. to meet with the nutritionist and the Psychiatrist and then its wait and see if he makes the list this time.  All this running around has really worn me out, I slept for 10 hours last night and awoke as tired as when I went to bed eyes , geez, could it be the stress!!! 

 

Sure hope all goes well with John, he sounds like such a wonderful person and has such a great sense of humor, it is refreshing to get the male prospective on this disease.

 

Judith

Posted 8/20/2008 6:04 AM (GMT 0)
Hi Judith, where are you staying? We stayed one of the hotels about 10 block or so blocks down hill from the hospital. Can't think of the name now for the life of me. I think the word Hill was in the name. It was one heck of a walk though when my husband was hospitalized there a couple times. I hated driving that much there that I would rather walk up hill 10 blocks.

The eval is very stressful and tiresome. I can really relate to your feelings.

Hang in there...........smurf Lots of thoughts and prayers..........
Posted 8/20/2008 8:06 AM (GMT 0)
John:

Hope you are doing well. Did you finish your book??? I could never finish one I guess I am not much for reading. Except here.

 

Praying for you and that all turns out well. The waiting is the worst part of the whole experience (I Think) .

 

Only good thoughts ,wishes, prayers, and please no more tubors. turn turn turn .

 

june

Posted 8/24/2008 12:39 AM (GMT 0)
The hotel would be called Cathedral Hills???? I just got back from my eval Thurs late evening. Will post later about the trip

Karen in Nevada
Posted 8/24/2008 2:53 AM (GMT 0)
Hello Karen, Yeah that's it Cathedral hill. They gave us a break because my husband was a patient at CPMC. I think we stayed there 3-4 different times.

smurf Have a good night........
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