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Posted 3/20/2011 6:14 PM (GMT 0)
As some of you know, my hubby Mike is on the UNOS waiting list.

Our forum has a some folks who have decided not to go the transplant route (are deemed ineligible/have continued to drink alcohol, are ill, etc.) and are doing as well as can be expected with advancing liver disease. 

We have had several members or their caregivers share news of their  lovedones sad final days, some are struggling through those last days even now.

And we have folks who are waiting themselves or with loved ones, hoping that transplantation is an alternative for them...at least for the short term.

That's my Mike.  And he is in a sorry state this weekend. He is in no pain, his symptoms are being managed by meds and clean living, but he is so sad and discouraged.  I think he thought he'd get ON the list and zip zip zip, he'd be on his way to the surgery and better health.

Not so.

Have we any experience, maybe one of the moderators has a more long term feel for this, about how long folks wait?

Pam says that Ron was listed and that he waited about 6 months, have I got that right?

I think another caregiver reported a year.

What I am trying to do is reframe Mike's expectations, telling him that TODAY there are sicker folks than he is, that he is actually doing pretty good, and that others need today and tomorrow's livers.

But to try to explain to him that he is not nearly close enough to death to qualify is a pretty tough message.

Any one can give us better information. The truth is best for Mike I think. 

They redo his MELD in May.  With 19, he isn't at the top of anyone's list. The average in FL is 22 I understand. I wonder if that is right.  

Carol

Posted 3/20/2011 6:28 PM (GMT 0)

Carol, it's been a long road for him and he's been sick a long time--so it's easy to understand his frustration and depression.  Has he talked about this in his meetings?  Or at least to his sponsor?  Facing things in sobriety is the whole point of AA.

As you pointed out, his current MELD score puts him lower on the list.  In addition, other factors determine who gets a liver.  I found some information on Mayo's website.  Read, especially, Where You Live:

http://www.mayoclinic.org/medical-edge-newspaper-2010/apr-09a.html

Hugs,

Connie

Posted 3/20/2011 6:49 PM (GMT 0)
ML-thinking about you and Mike on this journey. Always sending positive thoughts and keeping you both in my prayers. Would it help at all for him to speak with counselor about anxiety and feeling sad? I know you both don't need one more appt to go to...but if it might help...just a thought.
Emma
Posted 3/20/2011 6:54 PM (GMT 0)
Thanks Connie, that is a very good article. 1000 and 2000 days are really YEARS. OMG. After his nap, I'm going to have a really important talk with him....3+ years isn't what he expected. I dont think he will easily wrap his head around being this ill for years!

He has a new AA sponsor that I told you about. They met for coffee yesterday. The fellow cleared for Hep C several years ago and has been sober a long time. This was an important step, to get a REAL sponsor.

Also, hubby is scheduled to see a psychologist in the next week, a step he has resisted in the past. I am praying this women will capture his attention a bit, as the WAITING is a real stressor on him. Mike has been the kind of guy to keep his own counsel and DOES NOT think that therapy is relevant for him (what he means I think is that manly men don't go to shrinks...shrinks are for women! What I mean--his idea is silly, shrinks can really help when times are tough regardless of whether you are a man or a woman!)

Mike says he isn't talking at meetings. I think he chats and tells jokes with the members before and after and sort of zones out during the meeitngs. but he goes, and he goes a lot. He seems emotionally involved in several of the dramas that unfold at different households and they seem to be supportive of one another. So that is a benefit of "group" programs. The folks coming in and out often stop and chat with me, tell me they are praying for him, and that he is a good man and they hope he will be okay. If he is having a bad day, they worry about him, make sure he has a seat nearest the bathroom, etc.

He continues to say his story is unique and that he can't understand the steps. I think that is just ongoing denial...that he chose to drink rather than get and stay sober and have a nice long life with his family. Maybe once he realized he was HCV positive, he realized his path was pretty well prepaved and so what the heck!

The last 6 months have sure shown him that a person can clean up their act and get some semblance of their life back. He just waited a heck of a long time to come to that realization.

Maybe this waiting is good in way, gives him more time to think this all through.

Carol
Posted 3/20/2011 7:52 PM (GMT 0)
Once I was in a transplant program, they told me that once my MELD score went above 20, it would mean a wait of 12-24 months. Five years later, my score jumped from 18-24 in a week and a couple days later I received a new liver. For whatever reason, I was within a week of death with 24. Other people have scores much higher and aren't a week from death. I never believed I would get a transplant, even the day it happened. That helped immensely. I never sat there and worried if it was going to happen. My hepatologist and his PA told me, right off the bat that many people don't make it. I believed I would make it, but not from getting a transplant. I intended to eat and live cleanly and though I was sick, would live 'til something else killed me. Also, I thought a transplant would make me an invalid for life. Tell Mike, a transplant is worth the wait. I'm no invalid and every day is terrific.
Posted 3/20/2011 8:02 PM (GMT 0)

Carol, the good thing is that FL generally has lower wait times than other states.  Of course, they do it by district, but with FL having so many older people and no helmet law, more donors are available.  However, as the article stressed, there are a number of factors that come into play as to who gets an organ.

Ron's feeling that he is "unique" is common.  I felt that way, too.  It's an ego thing and, as you said, part of the denial.  The steps were hard for me to grasp in the beginning, too.  Step Meetings helped with that a lot.  But in time, and given enough Speaker Meetings, he will hear his own story at some point and realize that he is more like others than different.  Does he go to Speaker Meetings?  They are usually held on Sat. or Sun. nights.  His new sponsor will be good for him, too.

I wouldn't tell Mike, though, that it might be years.  That news would only further depress him.  I believe your explanation that others are more ill right now is best.

Hugs,

Connie


Posted 3/20/2011 8:38 PM (GMT 0)
I spent the last hour on the UNOS site. They have all the data you can sort a zillion ways...zone, state, center -- blood type --- sex---age--underlying diagnosis--etc. I ran a report on our center at Jackson for all the liver transplant candidates (including ones on more than one list), by Mike's blood type who are ON THE LIST NOW.

This is what I learned: 75 folks with his blood type are listed now, in all ages and diagnoses and MELD scores. (MELD is not one of the ways you can sort, or I have not figured that out). 145 folks with any blood type are currently listed for livers at his center.

They break out the wait times by

less than 30 days
30-90
90-180
180-365
1-2 years
2-3 years
3-5 years
more than 5 years

I tried to calculate some average time on the list right now, but the 17 people over 5 years mess up the math.

Best I can figure it out, the average time a person who is currently with Mike on the list, has been waiting someting over 8 months....

I think David said it right...you wait however long it takes until you are really really ill, then you get taken fast if you are going to get a liver at all. Thanks David.
Posted 3/20/2011 8:57 PM (GMT 0)
ML, do they also include antibodies? They play a part, too.

It does seem that transplant recipients have a sudden rise in MELD score which pushes them to the top of the list. It can also go the other way, where the MELD and symptoms decrease to the point where they become "inactive" on the list (like Rick.) Of course, with Mike having hep C, this is not likely to happen with him.

Hugs,
Connie
Posted 3/20/2011 9:02 PM (GMT 0)
The chart doesn't account for antibodies, but I'm sure they do when they do the assignments.

I agree with Emma, though, and that you have to maintain a really good relationship with everyone in your "medical network". I want everyone to think of MIKE when the day comes that it is his turn. That he has been compliant, that he has family support, etc etc.

We may go out tonight! Woo Woo. Together. We'll see. He isn't eating today, which is not good, but he is cheerful after his nap.

Carol
Posted 3/20/2011 10:34 PM (GMT 0)
ML,

First of all, understand that what your hubby is feeling right now is "normal".....my husband got very discouraged at one point. (Unfortunately right now,he's making bad choices as far as taking his medications wrong). But, I will tell you he has been on the list off and on for the last 4-5 years. He has had alot of medical issues that would keep him from being listed, and finally once that has been all cleared up, he was re-listed and then his medicaid program changed, which took him off the list for financial. It is a major roller coaster ride. That being said, the wait time can vary from state to state. Where I am at, they will actually list you, even with a MELD of 6-7, which is what my husband's last MELD was, but he had to come to terms that with that kind of a MELD score, he had a very long wait in front of him. Here they typically transplant people with an average MELD of 20, where in other states I have heard it can be much higher.

Being sick and battling this disease for a man can seem like an uphill battle. However, I am thinking that since he has the sponsor he has, this is a very good thing. You may even want to put a bug in his sponsor's ear about how discouraged he is. Sometimes hearing things from the sponsor goes much further than from the spouse. I have done that on many occasions with my husband's sponsor, and it helped quite a bit.

You hang in there, too.....keep your chin up, take time for you. Unfortunately, I did not heed that advice for a long time and really got in a bad place for a while. But, thanks to my group of friends, and this forum I have pulled myself out of my rut, so to speak.

Mer
Posted 3/20/2011 11:17 PM (GMT 0)
Another point I should have made is blood type. The more people with your type, the more competition for a liver. I am type B+, a somewhat unusual one. That made a difference for me. Also, when they called that day, a doctor asked my weight. Because the liver was from a young person, I was taken ahead of 2 others on the list with my blood type. I am 150 pounds and 5 feet, nine inches. Had the liver been from a 200 pound man, I might have not gotten one for quite some time. I was never aware of being on any list, since my MELD score had been under 20 until a few days prior to getting the call. I was so sure it would never happen, that my cell phone was off that morning. Luckily I turned it on and the message said to call the transplant coordinator. My suggestion is to ignore the list and concentrate on keeping healthy. They'll call when it's your turn. I have spoken to 2 young women on a transplant group who didn't have any liver problems, got sick and went to an ER. They woke up a couple of days later with new livers. No one knows why theirs failed. So much of this is totally unpredictable. Highs and lows won't speed up the process.
Posted 3/21/2011 2:51 AM (GMT 0)
Thanks for all your notes. We DID go out and we DID have fun. Sort of forgot about things for a few hours. C
Posted 3/21/2011 3:03 AM (GMT 0)
Ron battled HEP C for the past 18 years and about 3 years ago - he was given his first MELD score of 8. The GI doctor told us this.......and it was shocking (but true)..........'the best thing that can happen to you is for you to get liver cancer'. If liver cancer was diagnosed - Ron's MELD would go from an 8 to 22. Two years later after an MRI, the doctor referred us to the transplant team at Piedmont Hospital - a mass was found. The mass was 1.8cm and until the mass grew to 2.0 - then he would begin the testing/listing process. Six months went by and the new MRI showed the tumor at 2.2............we knew if all the other tests turned out okay - he would be listed.

BLOOD TYPE
Ron is A+ - come to find out, not as quick to receive A+ livers in our area.

BODY SIZE
Ron is a Medium/Small and 5'9" @ 155 lbs. They needed to find someone his size - so the liver would fit.

During our 6 month wait - Ron went from a MELD of 22 to 25 and was days away from a MELD of 28. I think the transplant team was very surprised at how long it was taking - told us donor organs weren't coming in like they had in the past.

I hope this info helps you.
Posted 3/21/2011 3:05 AM (GMT 0)
This is the link I checked several times a day:

http://optn.transplant.hrsa.gov/latestData/step2.asp

You can find out how many people are waiting at your hospital - waiting for liver/kidney/heart - and you can check it by MELD score too.
Posted 3/21/2011 3:14 AM (GMT 0)

Carol, glad you were able to get out together.

RC, thanks for that link!

Hugs,

Connie

Posted 3/21/2011 3:28 AM (GMT 0)
Pam, Went to the site, it is where I was earlier today, but I didn't figure out how to get to the MELD until you said it was in there and I just hadn't looked hard enough.

Mike was 24 in October and it looked grim as he was not alcohol free and they could not list him. Now that he has been "almost" six months they have been very generous with his listing (as they counted MONTHS rather than DAYS. Though he will be substance free 6 real months counting the DAYS in the next week!)

This new view of the data is very very intersting. His MELD at last check was down to 18 with better diet, the right medications, and three hospitalizations where they gave him a boost with the albumen, blood, and introduction of the Xifaxan!

He has the tumor, 2 cm. they will do another MRI in April to see what is happening with that. We heard that they could bump his MELD up if it is growing. We shall see.

We saw a bunch of our friends tonight, though we don't get out much. It was good for him to be with his buddies and they were so nice...wishing him well and hoping he gets the call soon.

He'll be tired tomorrow.

Post Edited (MamaLama) : 3/21/2011 7:51:58 AM (GMT-6)

Posted 3/21/2011 1:37 PM (GMT 0)
Hi Mamalama,  My husband was only on the list for a month before they took him back off.........I remember for me.......it was one of the longest months....I was a basket case during the wait.......I couldn't imagine how my husband was feeling.   He was the type that didn't analyse things too much....so he probably faired better than me. 

The only thing I can think of to tell you.......is to keep him busy as possible.....at least keep his mind busy......so that he has less time to think about it.   When my husband was sick........I'd bring home one of our granddaughters for a bit.   That could always take his mind off of things for a while, and mine too. 

Take care........thoughts and prayers........

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