Questions re. Cirrhosis, Liver Transplant & Caregiving.

OKAY GOOD, I REPOSTED ALSO. I'LL LOCK THE OLD POST.

Hi Heidi,

There is a lot here.

Click POST NEW TOPIC and call it HUBBY WAITING FOR TRANSPLANT or something like that.

And it would be great if you cut and pasted this last post in there...as more folks will reply.

And I will cut and post this also.

If you don't know how to do that, I could try....let me know...my email is in my profile.

Okay, trying to answer some questions.

In NY the MELD score for transplant is HIGHER than in some other centers. At Jacksonville MAYO the average is 22. So he is sick enough for FLORIDA. If you have the means to get down here and stay down here for a while, I'd call the center MONDAY!

There is a gal here who has just been through this with a brother from Massachusetts...they came, he got his surgery, they stayed a while longer in on campus housing I think...MAE is her name...look up her old posts. Put MAE BE HERE in the SEARCH and her old posts will pop up.

Mike had his transplant 2 years ago. He was 62. He is "better" but not a well man. We are also not married (for over 30 years) and it has actually worked out BETTER that way for insurance purposes. He has qualified for Medicaid. But if he had to report that I own a home and a car, he would likely lose it. He has had no income for many years as he has been too ill. He sold his home, sold his car, used all the money for med expenses and ran out of $$ for private insurance.

Mike is up, dressed, drives, shops, goes to the movies, enjoys his friends, reads a lot, visits with the grandchildren. But he can not work. He has not paid golf (his one true love). Or gone fishsing (his second true love). He is too tired. But he also still has Hep C though he has a new liver...so he still has a lot of liver disease stuff. Those with other kinds of cirrhosis actually do better post transplant. Our intimate life is behind us...many say that. We enjoy a snuggle, but that is about it.

Before transplant being his Caregiver was AWFUL. I would do anything for the guy, but with his changes in mood and grumpy affect it was terrible. He made me cry almost every day. I am a changed woman since transplant as I had to learn to "give it to god (as I know her)" as much as he did for AA. I mean that I realized I don't control things...I have to let things go and live day to day. It has been hard. Really hard. there is a caregivers thread and if you read back in that there are some pretty interesting stories....I love the one about the hubby who took the horse for a walk on the highway because the grass was too bumpy and he had to be rescued from the traffic. He has since passed (he refused transplant route), but I love that story.

Many with liver disease deal with diabetes also. Even those without a previous diagnosis. The meds can mess them up. Mike was on insulin for months and then...his sugar began to regulate itself and he gave up the shots!

On the caregiver allotments, they don't do that here to my knowledge...though they may if someone is a Vet...and if the patient dies. You could ask the social worker at the Transplant Hospital. I didn't hear about anything like that when I was looking after Mike. They may do that in the UK and other countries, but I don' t know about it here.

Good luck, come back often.

Hugs
Carol