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Avatar universal

Who's On First? What's on Second?

I'm a new poster; DO NOT bring out the black lights!!  I'm a 57 y.o grandpa. I have known for a year:  Risky behavior in 1985 - HCV.  Progressive symptoms since 2005.  6 - 7 yrs of failure to diagnose on our small island.  Diagnosed in Miami, Feb.2012.  Being treated by what I have thought are two brilliant GI & Hapatologist in Miami.  Treating symptoms only incl. Xifaxan, Nadolol and a diuretic.  Have Chronic Hep C.; Stage 3 H.Enceph (multiple events of full blown deliriums);Cirrhosis-Stage 4; Esophageal Varices (lower, the size of Kansas); removed 2 pre-cancerous polyps below stomach; Left Kidney Cyst; Gall bladder with 'numerous' stones; very low white blood count and platelets; MELD of 14 and Pugh -C.  Finally, I experience every symptom (including severe and passing put pain) except for yellowing or a basketball stomach.  PROBLEM FOR 14 months:  No Hep C treatment, it will kill you.  Too early for transplant list as you only have a 10% chance of survival; and we'll follow you every 3 months.
Now I await the excuse for not taking away the gall bladder.  I sleep all day, suffer pain and upchuck every night, can't drive car or scooter and get lost frequently when going to store on my bike, can't run Charter Fishing trips anymore, no more than 30 minutes in the sun each day ( I can't re-hydrate and body freaks) and I live just 90 miles North of Havana.  BASICALLY, my quality of life ***** although I keep positive, smile and try to get better so I can do a few things on my 'Bucket List'.  PROBLEM:  I am not getting curative treatment, just symptomatic meds. and a "great attitude Captain" on the way out the door.  Should I get a 2nd opinion (un-oh Medicaid) ?  Try Mayo Clinic in Jacksonville?  I need help and feel like I'm floating out to see with just a gallon jug of stale water.
20 Responses
Avatar universal
It's a little hard to follow your post, but, if I understand correctly, you are not currently treating you HCV and you are stage 4 cirrhotic. You say that HCV treatment will kill you, is that your opinion or you doctors? I do not know much about cirrhosis, so maybe Hectorsf will chime in. I know that cirrhosis will kill you, for sure, and, if your doctors are not taking care of you, then you definitely should get a second opinion...good  luck...Mark    
Avatar universal
I should have said that UN-TREATED cirrhosis will kill you for sure...Mark
Avatar universal
I would definitely get another opinion. You need to try and treat the HCV. Even if treatment don't work your liver will get a much needed break and also a chance the damage could regress some.

There is a great hepatologist by the name of dr shiff in miami. Here is a link:

http://umiamihospital.com/patient_care/patient_services/hepatology


Best of luck.
Avatar universal
I believe that I understand your post.
You have HCV and  advanced cirrhosis. You are suffering from a number of symptoms including HE.
You have excellent Hepatologists in Miami (are they with a transplant team?)
You are being treated for some symptoms but no curative treatment.
At this stage of cirrhosis your Hepa's are telling you that you cannot treat. That sounds correct to me.
"Now I await the excuse for not taking away the gall bladder" They cannot risk surgery with your advanced stage of cirrhosis.
The best person to advise you is Hector and he will hopefully see your post and reply soon.
I can only tell you that I know what you are going through must be frightening and lonely and you should stay in touch with this forum and the Cirrhosis forum. People care and will be here for you as much as it is possible to be there for someone in the cyberworld.
Stay close to your Transplant team and call them when you feel you need more assistance with treating your symptoms.
I wish you all the best, Capthayes.
Avatar universal
People with ESLD cannot treat with the current SOC.
4670047 tn?1375734001
There's a lot wrong here. If possible (and I hope) you should get to a teaching hospital. This is what Hectorsf would say. I don't like that there blowing you off. Did you have a biopsy? I don't understand are they just treating your symptoms. Cap this is very sad! I'm hoping hector comes along for this one. You can post in the cirrhosis forum, possibly rpooo can help out. Hang in there Cap!!   Kitty
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