Husband in end stage liver disease

Hi Shelly and welcome to Healing Well. I am sorry that your husband is ill. Glad that you found us, but sorry that you needed to.

There are many members here with liver disease or caring for a loved one with liver disease. The members are kind and caring. You will find alot of support and information sharing here.

Read some of MamaLama's posts. Her husband received a tranplant on May 1st. He is doing really well. I believe he may also have some blood sugar issues.

Also, one of the forum moderators is currently going through evaluation for liver transplant. "Hep93", Connie, has a very detailed post about the evaluation process.

Also, there are several members here from Austrailia.

Again, welcome.

Emma

Hi, Shellyl, and welcome to the forum.  I'm in the same situation as your husband, with hep C and cirrhosis, but worse in the sense that I have liver cancer for the 2nd time (HCC) and only the left lobe of my liver remaining.  I have almost finished my transplant evaluation at Mayo Jacksonville.  You can read about it in my thread, My Transplant Evaluation, in which I give a breakdown of tests and consults, etc.

 

We have several people here from Australia, who can give you support, especially with the NHS.

 

Also be sure to read the information in the folder entitled Hepatitis Resources and check out the Caregivers thread.  If you have any questions, feel free to ask.  Someone will be able to answer.

 

Hugs,

Connie

Hi, Shellyl, welcome to the forum. I recently came to this forum. Just want to let you know you are in good hands here. Someone will always have an informed answer to any of your questions or concerns. A lot of caring and compassionate people. I have visited many chat forums. This is the only one I chose to stay with. It's a place you can come to for suggestions, advice, and comfort.
Big Hug
Mitzi

Hi Shelly,

MamaLama here from Florida. Mike got his new liver May 1st as Emma told you. He has Hep C and Alcoholic Cirrhosus as well (or had Cirrhosis...hopefully that's gone for now). But the Hep C continues its evil deeds. Hopefully it takes a long time.


Mike was infected in 1970 and failed the treatment in 2003. His viral load was higher at the end than at the beginning!

How long has your husband been ill? What is his MELD score, if they do it the same in Australia. I'm sure his evaluation will be the same or similar to that reported by Connie--hep93--she has a very good description of her evauation process.

My hubby waited to get "on the list" for 6 months, until he was clear of alcohol and they were pretty certain he would be sober for the rest of his life. He was so sick, we didn't know if he could make it the 6 months, but he did. Once he was listed in Feb, he only waited 2 more months. Like Connie, they found a tumor and that pushed himup the list in his blood group.

Good luck to you both. It can be a tough ride, especially the mental and emotional components. My Mike was a pretty grumpy dude along the way and I found that hard to handle. But now he is pretty much back to normal.

HIs blood sugar continues to be uncontrolled, though we are working on it. He was over 300 again this afternoon...if they do the measuring the same way there. Around 100 is normal!

Come back to the forum when you can and let us know how you are both doing.

Carol

Hi Carol and Pam,

Im not sure what the meld score is but he is Childs Pugh class c, has been for over 12 months. The specialist was hoping for improvement but after 20 mths of no alcohol hiis liver hasn't made any recovery. His Dr was hoping to get the liver well enough to treat the Hep c. But unfortunately it wasn't to be. He got Hep c in 1980 and has not been well for a number of years. The brain damage when he was still drinking was really hard to cope with as it made him really aggressive, and was starting to get violent. Thank goodness he stopped, at least this way the Grandchildren will have nicer memories of him than they would have had he continued.

Dear Connie I Have everything except his INR Our Dr hasn't done this. Why do they do the Inr I thought that it was for people that are on warfrin to thin their blood.? If it's the prothrombin time it's 14. Thanks for your help
Shelly.

Shelly-my husband's test would report prothrombin time and INR. The INR was generally the prothrombin time divided by 10. So if his prothrombin time was 14.1 --- his INR would be 1.4.

Hope this gives you a general idea until you can check in with his doctor.

Emma

Thanks Connie and Emma,
If I have done it right his MELD is 12. I'm still unclear as to what this means for him. We have our first appointment on 20th July. To see if he is right to go onto the list. This is really helping knowing that you guys are there, I don't talk about it with my husband, mainly because he is asleep most of the time, and because I don't want him to feel it's all that I think about{even though it is} lol.
Best wishes to you all
Shelly

One more part to the transplant puzzle. When I was called to the hospital for a transplant, a doctor asked what I weighed, which was 150. A week before, I was 177, but my pcp, using IV lasix, albumin and a couple other diuretics, knocked 27 pounds of fluid off me. After the question about my weight, the doctor said he'd get back to me in a few minutes. When he called back, the first thing he said was, "You're the right size. We're putting you first on the list, ahead of two others." I'm guessing that the two others were larger than me, so that had something to do with my good fortune.

Organ transplant guidelines for Australia. You will find info on liver transplant criteria etc in this document.

http://www.tsanz.com.au/organallocationprotocols/downloads/TSANZ%20Elibility%20and%20Allocation%202nd%20Draft.pdf

Post Edited By Moderator (hep93) : 6/20/2011 7:00:41 PM (GMT-6)

Hi Connie,
If you'd seen my legs when they were about to split down the middle, it would be believable. When you saw me in NYC, I was still about 140. Now, I'm at 148-150.

Thankyou for the info, We are only just getting onto the treadmill that you all are so familiar with, so again thank you all
Shellyl