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NASH, high MELD, wife very worried

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Posted 6/3/2014 11:13 PM (GMT 0)
My husband is in end stage liver disease NASH, he has been having a lot of pain in the abdominal area! can someone please help is he starting die for his disease?

Thanks

Post Edited By Moderator (MamaLama) : 6/3/2014 7:47:45 PM (GMT-6)

Posted 6/3/2014 11:47 PM (GMT 0)
Hello Dana, Could you provide a little medical background so we can assist you better. Stuff like how long since diagnosis, Is he seeing a Hepatologist, How far advanced is the disease. Give as much information as you can so we can get to solid answers for some of your concerns. We aren't physicians but we have a great team of people who have seen the worst of liver disease from the caregiver and patient perspective.


Ziff
Posted 6/4/2014 12:36 AM (GMT 0)
Diagnosed in oct 2013 non alcoholic cirrosis, he has adema, ascities, portal hypertension, his MELD IS 27 has paracentesis every week is on the transplant list at St. Louis University hosp. Also verisies
Posted 6/4/2014 1:00 AM (GMT 0)
Dana, I was diagnosed over 5 years ago with End Stage Liver Disease due to alcoholism. Although the reasons are different for diagnosis my situation was much the same as your husband. In fact MELD was a little higher when first diagnosed.

How much fluid are they removing and are they administering albumin afterwards? For how long has he been getting paracentesis done at this frequency? I had chronic ascites issues and at one point was having to be drained twice a week for months on end. Is he taking Lactalose and Xifaxin? Are diuretics not working?


Ziff
Posted 6/4/2014 1:42 AM (GMT 0)
H Dana, Welcome to the forum.

There are patients and loved ones here dealing with all kinds of liver disease.

Your husband sounds like he got very sick very quickly...and the symptoms and a very high MELD score.

Do you have any idea of the average MELD at transplant for your center? YOu can look it up on the UNOS website. If you need help with that, my email is in my profile. But Healing Well in the Subject line so I know you aren't spam.

We will be glad to walk this path with you....many of us have been there. My partner, Mike, was so very sick before his transplant we never thought he would make it. But he did an dis here playing golf 3 years later! I need ot add that he is just now starting to feel way better as he had Hep C also, but has had a treatment for that this spring and is really felling wel.

I hope hubby has a positive outcome as well.

Hugs,
Mama Lama
Posted 6/4/2014 1:49 AM (GMT 0)
Dana,

I looked up the UNOS numbers for liver trasplants at SLU. They have done 2 male TP in 2014 if that informaton is correct. Where in MO do they do a LOT Of them. Worried for you.

Mama Lama
Posted 6/5/2014 3:22 AM (GMT 0)
The only other hosp in St. Louis are is Barnes Jewish and SLU and they share a list. He is on xifaxan and laktulose, he has paracentesis done once a week and they normally take. 7-8 liters off, and yes he is receiving albumin afterwards. He is now as of last night in ICU at our hosp. His blood pressure is very low and his blood count is very low also he now has an infection in his abdomin, so he is off the list for now. We chose SLU because they are rated one of the top 10 liver centers in country..I am scared for him all the time. It seems like he will be good for a while and all of the sudden he is back in the hosp in critical condition. Use trying to get a idea of what to expect, thanks so much for all the comforting words.
Posted 6/5/2014 11:31 AM (GMT 0)
Dana, Mike was in the hospital once a week for almost a year...kidney failure, sepsis, horrible pancreatitis attack--nothing by mouth for 5 days, internal bleeding, etc. It was really touch and go...but if his 3 golf rounds are any indication of how well he is feeling post transplant 3 years, well...it CAN WORK OUT JUST FINE.

Hugs,
Mama Lam
Posted 6/5/2014 2:46 PM (GMT 0)
Thank you so much I am so glad I joined this forum...God Bless
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