20870309 tn?1554176413

GAVE Syndrom(again)

I am a 72yo retired ICU/ER Nurse(also an Electrical Engineer) I had Hep C from a dirty needle stick in ICU (1990) Over the next 25yrs I battled Hep C with the only drug availably...Interferon. Did not work. Few years later tried pegulated  interferon. Worked but I could n't keep Hgb > 8. Not good. Kept passing out. Long story short, a drug finally came out that was 99% effective...Harvoni(My name is Harv. The stuff was made for me. lol However, it had already beat up on my liver for 20 some odd years and left me with stage 4 cirrhosis. There is no stage 5. Heretofore, I had been "compensated" with no clinical symptoms and good lab work. Then(about 10 days ago I twice passed a large amount of tarry black liquid stool. As a nurse I immediately knew it was an upper GI bleed. Also as a nurse, I knew that this bleeding could be(probably is)  the results of Portal Hypertension/cirrhosis..
After gastro. MD informed me that I have GAVE. Gastro Atrial Vascular Ectasia or "Water Mellon Belly". Got an appointment in 7 weeks. I have between now and then to generate all my relevant questions.
PS They took me off my Prodaxa (Anticoagulant.) I was taking for previous a-fib. Have had one previous stroke from a-fib. Difficult decision....hmmmm….Stroke or bleed to death. What do you guys think?
As I understand , there are several other medical issues that are associated with GAVE as CalGal and Sheila stated . By the way, your guys synoptis was very informative and accurate. To add to this list I submit:
1. Sjögren's (pronounced "show grins") syndrome is a chronic (or lifelong) condition that causes dry mouth and dry eyes. The syndrome also can affect any of the body's glands, including those that secrete sweat, saliva and oil. I have this also
2. Portal hypertension: Portal hypertension(Can't be measured but I'm sure I have) involves the portal vein which carries blood from the digestive organs to the liver.
The most common cause is cirrhosis of the liver, but thrombosis (clotting) might also be the cause.

I would like to find a support group for GAVE. This site does not have one.

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