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04/01/2012 09:35 AM

My husband has Hep C, cirrhosis

carolyngoad
Posts: 29
New Member

My husband is 57 and has had Hep C for many years. We have only been married 3. We have had some bad times in the hospital already. He is in end stage cirrhosis. He has good days and bad. I have a hard time with this when docs say there is nothing else they can do. They won't put him to sleep for surgeries anymore unless its an emergency, they say he probably couldn't make it. He has really bad varicies. Some days he takes his lactulose and some days he doesn't. It is frustrating. He has psorisis so bad and scratches all the time until it bleeds. I hate watching the progression of all this. Its scary. Any advice on how to deal with all the emotions this presents?
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04/01/2012 10:49 AM
tcoyle02
tcoyle02  
Posts: 9
New Member

Carolyn,

I am sorry to hear that your husband is in such distress. I was in his position in 2008-2009, so can understand what he is going through and something of what you are going through. If your husband has not been evaluated to be a transplant candidate yet make sure that you make ever effort to get him accepted and on a list at your nearest transplant center. If your husband is smoking, or drinking get him to stop now. Most transplant centers will not perform one until a patient has been abstaining for at least 6 months. Make sure that your husband takes his lactulose just as the doctor directs. This will save him from trips to the hospital due to ammonia build in his body and brain with will cause very serious consequences. I was taking between 3 and 6 tablespoons of lactulose 3 times a day when I was near your husbands stage. I was suggested a OTC soap from the local pharmacy for sensitive skin and clobetasol propionate Ointment 0.05% to apply on my skin to reduce the itching. They seemed to help alot. I found comfort in my faith during my illness, my wife was angry and disappointed that more could not be done faster. I hope to see a post about a transplant listing and then a successful transplant. Until then I will be praying for both of you.

Post edited by: tcoyle02, at: 04/01/2012 11:01 AM

Post edited by: tcoyle02, at: 04/01/2012 11:01 AM


04/01/2012 11:32 AM
carolyngoad
Posts: 29
New Member

Thank you T. He hasn't had a drink since October last year, but smokes like a freight train. His MELD score is a 10/11 so he says they won't put him on the list. He is a VA patient so he is going to see the Hep doctor again this week and going to ask them. He sees them every 6 months. I just hate the disease. He is a grumpy man, and alot of times its like he doesn't even hear people right beside him talking. I know the signs of the ammonia levels and can tell when his is off. When we first got him home from the hospital the last time he was taking his lactulose like he should. Now its just every other day. He is really grumpy about it.

04/01/2012 08:30 PM
tcoyle02
tcoyle02  
Posts: 9
New Member

I had my transplant done through private insurance only because I was able to keep it through Cobra after I had to stop working. I am now rated 100% disabled through the VA and the Social Security Administration. If your husband has not filed at both agencies, especially if his Hep C is service related. This will help you both in the long run. I know that the MELD score is very important for getting listed. I do not know what the minimum is for the VA but where I was listed you had to be at least at 16 for listing and 25 for transplant. You can imagine just how bad the health gets by the time you reach this number. My MELD seemed to stay steady at 14-16 for the first year I was dealing with this but in the second year it would fluctuate up and down dramatically. I this that I was at a 27 by the time I was transplanted. This disease has an extreme effect on behavior. I ended up seeing a therapist both before and after my transplant. I went through 2 different transplant centers and neither one of them would list me if I was smoking. This is because smoking causes the body to heal much slower and be more susceptible to infections. After transplant your body is already immunosuppressed to keep the new liver from being rejected. Taking lactulose was probably one of the worst things I've had to do on a long term basis. It is just a horrid thing to take time after time and day after day. But it is necessary to help the body get rid of toxins including ammonia. I will keep you both in my prayers.

Sincerely,

Tim

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