End stage liver disease.. need some support, please

Hi Everyone,
Well I went and got drained yesterday. They only got 2 liters which I was sure I at least had around 4. I can't imagine 8 liters. 4 1/2 is the most they have taken from me at a time andI was so miserable with everything..breathing,aches and pains, just plain living. God Bless him.

I got a phone call from a Foundation that is paying for myself and my husband to fly to San Francisco to the CPMC for a liver evaluation. The girl there was so ditsy sounding in regards to when I needed to be there etc. I had to fill out a grant application so it just seemed so strange that she did not know anything. The reason this foundation is paying for this is because my husband has been on SSI for his back and feet and only getting $637 a month for a family of 4. I finally just got SSI and now we both are getting $478 a month. The social worker in SF recommended this foundation,(thank God) and the hospital is picking up the tab for our hotel room. I can't explain how grateful I am for all this.

My post will probably sound out of sorts because I was reading everyones posts. As far as being an alcoholic and admitting it, been there done that. I did not think I was an alcoholic and anyone who said different was crazy. I drank every evening. did not think a thing about it. When someone said something to me, I would drink 24/7 just didn't matter. Then I would go back to drinking in the evenings again. But when I found out about my liver, after a very short 24/7 bout, I quit. It will be a year the end of this month. I also quit smoking on July2nd. That was harder. But with faith, I have done it. My teenage sons are so happy now.

As far as itching, I go through that too. Has anyone had itching with like blisters but not blisters?. Avon has a moisturizing cream called moisture therapy that helps me most of the time

Has anyone had problems with their hair falling out? I have really thin hair as it is and every time I turn around hair falls out. Any suggestions?

MELD count. Do they automatically test for everything that goes with the MELD count? I have never had my Dr tell me anything about this before. I read it online. What does this mean?Will they do this when I have my evaluation?

I used to sleep all the time when I first was diagnosed. I also lost all kinds of weight. One day I finally decided I was not going to let this disease keep me down at least for as long as possible. I started taking vitamins (a lot of them) as well as Milk Thistle,an herb to promote a healthy liver. I started drinking lots of water and juices. After a while I started feeling better and having a better attitude and actually gained some weight back besides my big belly. My biggest complaint at this time is the muscle and joint aches. It sucks to feel like you have the flu all the time. I should feel lucky at this time that that "is" my biggest complaint right now. I have gotten 3 hernias since all this started so I have restrictions on some things. They can't fix my hernias because they said I will bleed out so that stinks.

Anyways thanks again to all and for being here for support and knowledge. I can't explain what a relief it is to finall have someone who knows how I feel and what I go through and will go through.

Hang in there everyone and God Bless all of you!

Karen

Karen, your meld score determines your placement on the waoting list. The higher the score the better your chance of a transplant, different regions transplant at different levels. The score is easiest to understand if your go to the UNOS website it explains it better than I can. You have values assigned to Billirubin(liver function) creatin(kidney function) and INR(combination of certain blood qualities). My hubby hovers around 19-21 and in MA you arent usually considered till 30 +. As for your hair, the human body has an inate self preservation and with organ failure it determines what is most important. Hair, nails, skin, muscle are not a priority any more find a short easy care hair cut use scarfs hats etc.. and please protect your skin from sun damage use sun block when ever you leave the house if possible Burts Bees for hands and nails helps but it is a little pricey maybe write their customer service and they will sent you some free stuff. You will be amazed what companies will do when asked. Are you on SSI or Disability?
Sue

That is good news, Clare.  You might want to mention AA to your friend.  When she starts feeling better, she may think it's okay to drink again.

Hugs,

Connie