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Posted 1/18/2010 3:30 AM (GMT 0)

desi  My husbands legs did the same as your husbands.  The fluid just weeped from his legs until they slpit.  Then we couldn't get them to heal because of the weeping.  ONe of his hospital stays I demanded a would care Dr.  They showed me who to do and his legs healed.  It took a while but it worked.  I have also told a few other people and it has worked for him as well. 

Also I have been told my my husbands Dr. at Vanderbilt it is common to need a liver/kidney transplant at the same time.  And they do a lot of them.  Jerry;s kidneys where really bad several time but they always seemed to bounce back.  I wish I could remember what we did.  It wasin't always the same think.  I will go through my notes.  Just hang in there.  You can do this.

 

JoAnn

 

 

Posted 1/20/2010 5:12 AM (GMT 0)
I really hate to write this but I know I need to let you all know what is going on. Unfortunately, my brother, Mike passed away yesterday around noon. My brother was discharged from Hillcrest Hosp on Tues. with home health nursing but they were unable to get him the medical equipment he needed immediately and his ascites became worse and he ended up being re-hospitalized this time at Saint Francis Hosp. on Friday morning after his daughter found him unresponsive and called 911s. At Saint Francis Hospital they did everything to try and save him but no matter how much blood, plasma or other medication, treatment (including dialysis) they gave him he continued to get worse and is labs bottomed out. He was bleeding internally and still had all the other problems mentioned previously. His kidneys shut down and finally we just asked that they make him comfortable with morphine and ativan. I wish I would have joined this forum sooner because you all have been a big help and I always passed on the information you gave me. But Mike seemed to be too advanced in his disease. When he was discharged from Hillcrest his MELD score was 39 and we couldn't get a transplant center to accept him. The U.S. Senator that I sent a letter to did call me back and I  had to explain that Mike had already passed away and they have indicated that they will join with me to try and make sure that others who are recovering alcohlics will have a chance for a liver transplant just like everyone else. There is so much prejudice for recovering alcohlics that if Mike had it all to do over again I would have told him not to mention that he was ever an alcoholic because it defintely went against him. Mike was not bitter but seemed to accept the responsiblity for his part in his disease  but we all make mistakes and everyone deserves good medical treatment. Anyway, I will continue to fight on and I so appreciate all of you because you did so much to encourage me during this hard battle and I will forever be grateful. Desi
Posted 1/20/2010 5:30 AM (GMT 0)

Desi, I am so, so sorry to hear that Mike has passed away.  It was just his time, honey.  Nothing anyone could have done at this point could have saved him--probably not even a transplant.  As liver disease progresses, everything goes haywire and it becomes a losing battle.

You are welcome to post here anytime, though.  You can help others who are new and going through things that you experienced.

My sincerest condolences to you and your family.

Big hugs,

Connie

Posted 1/20/2010 5:32 AM (GMT 0)
Desi, I am so sorry. Please accept my sincere condolences on your brother's passing.
I agree, it should not matter what caused the disease as long as the patient is complying with all the doctors orders now. Take care.......and come back anytime.........thoughts and prayers..............
Posted 1/20/2010 1:45 PM (GMT 0)
Thank you. I will be posting when appropriate because I do want to help. Mike would have wanted that too, because this has been a nightmare that nobody should have to go through. By the Grace of God we will get through this. I appreciate your kind words.
Posted 1/21/2010 3:28 AM (GMT 0)

Desi I am so sorry about Mike, I wish you and yours my best.

Sue

Posted 1/25/2010 3:39 AM (GMT 0)
Desi,
I am a new member, and so appreciate your sharing Mike's story. I am a recovering alcoholic, and believe the medical professionals need to treat all patients equally. So sorry for your loss. god bless.
Posted 1/25/2010 9:21 AM (GMT 0)
Desi,

Well said about your brother owning his disease and you answereed a question I had about being treated unfairly because of alcoholism & addiction. I have been hearing many stories about discrimination against alchoholics and addicts being put on the bottom of the transplant list. Some people say to lie about it,but I would not no how to lie about my alcoholism & heroin addiction it is a big part of my story. I had a sponsor that used to say" You were not committing suicide putting that needle into your arm or taking that daily drink". I would say "No" i was just trying to get high. But now i know what he means being in this position i am in, today. I had read this thread earlier in the month, but tonight I am shocked to hear the bad news. My deepest sympathy.
Posted 1/25/2010 3:37 PM (GMT 0)
Mike, I still have bad "tracks" in my arms--over 40 yrs. since I last used IV drugs.  So I couldn't lie, nor would I be able to.  I was never a good liar and in AA we learn to be brutally honest, with ourselves and others.  Also, I think any astute doctor would know if someone's liver failure was caused by alcoholism.  I don't really understand the accusations of discrimination.  Because they require 6 months of documented sobriety before listing a patient for transplant?  That is just to try to assure that the recipient will not ruin his/her liver in the same way as the old one.  I think it's reasonable.  I have been treated poorly in the past, based on my drug and alcohol history, but I've been clean and sober so long now (23+ yrs.)  that it's no longer an issue.

Hugs,

Connie

Posted 1/25/2010 6:48 PM (GMT 0)
When I was recovering in MGH from my transplant, several nurses told me that they (the docs) were very careful about putting people on the list who had drinking problems. As one put it, we're not here to help people who are going to get a new liver, just so they can continue to abuse alcohol. She called it the "Mickey Mantle Syndrome." Me surgeon said that they have a proprietary interest in their livers. In other words, they insist that their patients not take this lightly and screw up. I completely agree with this. Why waste a liver on someone who'll abuse it, instead of giving it to someone that won't? On the other hand, if a person has quit abusing alcohol or drugs, that's a different matter. As far as I'm concerned, a person who's now clean and has Hep C shouldn't be discriminated against, no matter how they got the disease. **David**
Posted 2/9/2010 2:02 AM (GMT 0)
It has been nearly a month since my brother Mike passed away from Cirrhosis of the Liver. Mike was an alcoholic but he had quit drinking eight months ago but it was as if no one would believe he really quit. When we got his copies of his medical records each entry in his chart said something about him being an alcoholic.That information should have been on his history page but not on every page of his chart.  If we learned anything from all this we learned that from the very beginning of your diagnosis you should  see a liver specialist, a hepatologist Not a GI or an internist but a hepatologist. If Mike could have seen a hepatologist he would have most likely  put him on a salt restricted diet in the very beginning, he would have told him to immediately start going to AA again and document it by having the chair person verify he attended the meetings. He would have also told him to lose weight even though Mike had about 100 pounds of fluid that seemed impossible to lose because they couldn't drain it.It seems that hepatologist have more expertise in this area and know how to treat end stage liver disease.  I will be praying for all of you. Desi
Posted 2/9/2010 2:16 AM (GMT 0)
Hello Desi and welcome back. You are absolutely correct about seeing a hepatologist as soon as possible. My husband's transplant team treated him so much better than his GI and they were able to manage his ascites and edema with diuretics . He was never drained. But it was one tough balancing act to do.

Hope you are doing okay..........thoughts and prayers...........
Posted 2/9/2010 4:09 AM (GMT 0)

Desi, I agree with everything you said.  While it's in hindsight, it might help someone else.

Big hugs,

Connie

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