End Stage Liver Disease

[padewan]

My husband was diagnosed with stage 4 Cirrhosis last fall. We have been well educated on how to control the symptoms and he takes his medicines now. (He didn't for a few months).  Lactulose, fuerosemide, sprilactolone, an antibiotic, ect. He still doesn't eat low salt like he should. I can tell when his ammonia levels are rising.
He just had a CT scan of the abdomin last week and we go to his liver dr this week.  I get nervous, cause I have been a widow before, and now it just doesn't seem real at times that my husband is terminal.  For the most part he has been feeling pretty good.  He has been more active and less sleepy since he started taking his meds correctly again.

He has always dreamed of living near the coast. So we have been planning for 9 months to leave our home, buy a motor home and live in Florida. I consider this his final wish in life. My concern is, will this in fact be good for him?  I want it to be.... he is 120 lbs overwieght and can not have a transplant with the weight. He has portal hypertention, swelling, low blood platelet count,  and has been jaundiced for about 3 week off and on lately..  I want us to do this, but I don't want it to make him sicker. Here in St Louis we never get out a lot, and down in florida we do.  I have extreme arthritis and fibromyalgia, and other things, and he has more strengh than I do.

Can anyone comment on this?  We have a conversion bus and plan to leave in about 3 weeks.  We will be living in parks and sight seeing and relaxing mostly.  There are VA hospitals and clinics there also.

I am frightened for the future when I come to grips with it. We have been married 5 yrs and he is WONDERFUL!!!
My former husband died suddenly of a massive heart attack.  After that happened my life was a nightmare.  John and I have tried to get things in order to prepare for if one of us died, but you can never be totally prepared in many ways.

After reading forums here, I realize that he ( without a miracle from God, of which I believe in), may not live a whole lot longer.  His dr of course can not tell me how long he has cause the disease is unpredictable at times.

But lately he says he is not as hungry as he used to be, and the other day he felt like he was smothering from fluid.  These are new things.  Oh my goodness, what am I to do?

[rpooo]

I read yur post and thought I would mention a could of small ideas that maybe would help.

How high is your meld score at this point?

I wonder what your sodium level is. It seems to me that you should never add salt to anythig you cook and you should shop for low sodium foods. Also low sodium V8 juice is an exellent source of vitamins that could really help make a difference in how you feel.

Also I wonder if you save a copy of every lab test you get done. It can be really interesting to compare one to another. While making an attempt to change the outcome. Most is controlled by diet.

Randy

[joyceaball]

Hi, I am also stage 4 cirrohsis, on all the same meds your husband is on and have the same symptoms.  I also am filled with fluid, in the past 9 months I have had anasarcA, that is swelling all over my body that I cannot control due to being on the diuretics for so long after a while they stop working. I was on 4 different diuretics and still swelling, they used to put me in the hospital once in a while about every 4 months and diurese me with intravenous diuretics, well the last time in october it didn't work in fact it almost killed me. I lost so much so fast that my electrolytes bottomed out and I crashed. I am on the list for transplant even though I am really overweight from the fluid which after awhile settles into your tissues and stays there. Does he have relatives that could be a match for him, I have been stage 4 since 2003 and I am still here. I do try to limit salt though its important when you swell. what my doctor told me was I can cook with salt but keep the shaker off the table. No added salt. I also limit red meat well actually its protein you have to limit. I have had quite a few bouts with encephalopathy. I take xifaxan which is an antibiotic that keeps you from contracting other things because you have such loose bowel movements so many times a day. It does help with encepalopathy but is really to prevent infection in the bowels. I understand what you mean about florida that is my dream also I want to move there. I love the warm weather I feel better in the warm weather and one other thing is they have a whole other view on transplant down there and you can get one much quicker there, I live in Pa and I have been waiting 7 years now. I do have a live donor if there is no other choice. Please talk to your gastro and they do have places you can take your husband to learn of the importance of good care.

[rpooo]

Talk to his liver specialist about all your questions. Write them down if you need to. I think this is a question for a medical professional thats has acsess to your husbands medical files. I think it would be much to dangerous for anyone else to advise your situation. It might be a good idea to obtain copies of his medical files from his and you doctors.

Since he is still refusing follow a low sodium diet its quite possible that he is retaining fluid. If you are not familar with ascities then try and google it. I'll be glad to help you with this if you need. SInce he is still have problems with his ammonia level and is taking the lactulose then I suggest two things. Reduce the amount of red meat in his diet and if necessary talk to his doctor about Xifaxan. Xifaxan is a medication in pill form prescribed to help control ammonia levels.

I'm sorry I couldn't be more help and I wish you both the very best! Take care.
Randy