Connie, Pink Grandma, Rick ...
Thanks for your fast and caring responses.
To answer some questions;
Frank was diagnosed 31 July 2009. Prior to that he usually had a little bit of a belly, but we wrote that off as too much good food and drink. about a month before that his appetite decreased and he began to lose weight at his waistsize, but not the abdomen. So, I imagine that the ascites was already active before his diagnosis and before we really noticed his abdominal growth before that.
He was placed on diuretics, Spironolactone and Lasix along with Lactulose. He was taken off all three because of bad signs from the kidneys and placed on Xifaxin. Eventually, he was back on Lactulose, but a small dosage. Those are working well with his system.
As far as how close he is to being listed, NYU has told me that they want him to be in therapy for at least a month before they can list him, but that's not guaranteed. It could still be the 6 month standard. NYU says that AA is not acceptable because it is anonymous and therefore can't be documented. He has not had a drink since his diagnosis and is truly committed to sobriety. "I want to live" has become his mantra.
His MELD has come down a bit and is 10 right now, so we're way away from a transplant. We realize how fast that can change and we are prepared for that.
One of the concerns here is that Frank is Blood Type O. That means that he'll probably be on the list for a long time. We're afraid that the stint will give out before a liver becomes available. What happens in that case?
We've discussed this and Frank & I agree that quality of life has preference over quantity. Sorta like the old joke about the man who complained about a restaurant he visited. "The food was terrible, I couldn't stand to eat it. Not only that, but the portions were too small!". Anyway, the ascites (he is that pregnant skeleton right now) is keeping him from attending functions, going out in public, being seen by friends and visitors, shopping, being photographed, etc.
His sodium level has been low, but is has been historically. We keep him at or under 2000mg daily. We wondered about that effect on his ascites as well.
Once he's listed in New York, we plan to start the process again in Pennsylvania (where we live). We've been told to get to Florida, but that's not feasible because of distance and lack of friends / family there to stay with. In two years we hope to have moved around some investments and obtain a small place there so we can list him there as well.
Also, his navel is popping out a bit and his flesh there is thinning. We're afraid that might be a beginning sign of herniating and we're afraid of it rupturing.
Now, after further conversation with NYU, their concern is that if Frank "crashes" after the TIPS procedure, they say that he will have no safety net if he is not already listed with UNOS. That makes sense to me, but he says he can't live like this for 6 months (if that is how long it will take to list him). Our local hospital, PMC - Pocono Medical Center in Pennsylvania, is where he goes for paracentesis. His GI there, the doctor in radiology, and the nurses are eager for him to have the procedure and will telephone me Monday with a date; probably 08 December.
I'm just not sure what to do. I don't know if I should just go ahead and schedule the procedure and then tell NYU, or make Frank wait until NYU says to go. Of course the ultimate choice belongs to Frank and I just want him to be happy and comfortable.
Thank again for your help in this and for your dedication in this forum. You're a gift to many.