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Avatar universal

Hep C; Diabetes and end stage liver disease

To: Anyone
I went with my husband to hear for myself what is going on with his liver disease (cirrosis), knowing he also has hep C and is diabetic.  I looked at the computer monitor while she was talking to learn he has been deemed with "end stage" liver disease.  A direct result of the acsites is a herniated belly button where his belly resembles a porpoise nose.  Once in a while he has an intestinal block and he is hospitalized.  He has had other weird things happen to him and I wondered if anyone has ever heard of it.  His potassium levels and calcium levels were so out of wack they were afraid of a heart attack....he is 53.  Also, he retains a lot of fluid in his feet and legs.  One day his big toe and 2 others had giant, I mean HUGE water blisters on the tops.  His feet looked like a blown up surgical glove.  Anyone experience that or ever hear of that???

Thanks, Diane
12 Responses
Avatar universal
I noticed your post earlier and just want to tell you that the only reason I didn't reply is because I don't know anything about the problems your husband is facing. I would guess that some other people here on the forum may also be at a loss.

That said, there are some amazing people here with knowledge and experience who might be able to lend you the support you need.

I want to send you my best wishes and sincere regrets that I can't be of any help.
Avatar universal
I wonder if you would find more people who have experienced these things at he medhelp liver transplant board.  My husband has cirrhosis also but it hasn't progressed to the same point.
I will say a prayer for you both.

Avatar universal
I had end stage liver disease and had a lot of weird labs that required medications to correct an imbalance.  I had ascites and very swollen feet, legs, and hands.  This is caused the the leakage form the liver that is unable to process and filter like it used to due to fibrosis (scarring).

Is your husband on the transplant list?
If he had been hospitalized for a intestinal blockage due to an abdominal hernia why haven't they operated on the hernia.  I suspect is platelets are too low and that would make the surgery dangerous, and the likelihood of the hernia returning due to the ascites is high?  Maybe I am assuming too much and the intestinal block is caused by something else.  

Other symptoms I had were cramps (sometimes in my whole body), itching, exhaustion and confusion from the ammonia in my system.  I took medicines for all of these symptoms.

You husband needs to discuss the transplant with a good hepatologist.  Or just as good call a local hospital that performs liver transplants and go see them.
Avatar universal
Thank you for your comments.  Yes they have not operated on his hernia for fear the stitches will pop from another ascites extention.  He does have the itching, his fingernails are pure white, I don't know about cramps, but his right lung is also fills up with fluid and he needs to get it pumped out periodically  He has had a cough for 18 months straight.  Went in to have his ascites pumped and came out with a cough.  It has never gone away.  He coughs so hard he vomits violently as much as 3 times a week.  He writes that off as gag reflex.  Your comment on ammonia is interesting.  He is allergic to ammonia.  He can't eat any shellfish as a result.  He is also suffering from insomnia. I will investigate to see if his Dr is a hepatologist.  If no one locally......we have the Mayo Clinic 3 hours away.  He hate doctors and would rather not go than receive bad news.  It is difficult for me when he cancels appointments.  We had no insurance for a year so our bills are astronomical.  We have it now but he still cancels appointments.  I appreciate advise on here so I can take matters into MY OWN hands and see that he gets the treatment he needs.
Avatar universal
Thank you very much for your kind words.  I need this place to learn more about what is happening to him so I can understand.   His answer after I ask how his appointment went (when he goes) is "FINE".  Ummmmm not good enough!!
Avatar universal
Thank for your response.  I hope your husband never gets to where mine is right now.  My thoughts are with you.
Avatar universal
I never answered your question.  The woman he is seeing, who I believe the REAL Dr. assigned to him when she learned we had no insurance, told him she could not put him on a transplant list until he had insurance.  (we have it now)  But even if we had it, his sugar, calcium and potassium levels are so far out of whack that "I can't justify wasting a liver on you".  I was there.  I heard her say that one.....righ after she informed him that he would not live to see his daughter's 21st birthday.....she just turned 17.  I would love to give her name and address on here to totally discredit her.  But I don't need a law suit.
Avatar universal
I agree with gdwill2u. I would get your Husband evaluated at a transplant clinic as soon as possible. I would not rely on the woman that your Husband spoke with.
I can relate to your Husband's aversion to doctors and his fear of the bad news he might hear. But, he's at a place where his only hope is getting sound medical attention and I think a transplant clinic is the best place for him to get that attention.
Good luck,
Avatar universal
Thank you Mike.  I'm on it.
179856 tn?1333550962
There are people on this forum who have been very successfully transplanted. Without giving away names.......you've already spoken to one who is a great friend of mine and I hope that you do find a second opinion in the expertise of liver transplant. Get to that clinic, asap.  

We all wish you and your family the best.
Avatar universal
BTW I had a liver transplant in June of 2007, I lost all of the symptoms I discussed in my last post immediately.  My feet took another month to un-swell and I was weak as a kitten for awhile, but all the encephalopathy, ascites, itching, cramping, nausea was gone.  Now I feel great, thank God for Johns Hopkins transplant center and my supportive family.

This is one appointment he needs to keep, and there will be a lot of testing, but stick with it, it sounds to me like a new liver his his only hope.

Avatar universal
Thanks for sharing.  He has all of your symptoms and I'm sure more he is keeping from me.  i will get him to the doctor.  i may not be able to tell him where we are going, but i'll get him in there.

One thing I'd like to share in the forum is that my husband was told by a friend who owns his own wellness company to get a good juicer and juice fresh BEETS.  He adds a half of an apple for taste and his ascites went from 11 liters to 4.
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