turned down for transplant

The call came today. My dad has been turned down again. The first time was Ohio State, this second time, Cleveland Clinic. He has some heart issues that need surgery, but he cannot have the heart surgery with the condition of his liver and he cannot have the liver transplant with the condition of his heart. We first learned of his cirrhosis in Dec. 09 and it is due to a genetic disorder, Alpha-1 Antitrypson Deficiency. So looks like we just treat the symptoms now, which we will be using Ohio State for that. His MELD has ran 17-20 since last fall. Anybody seen this situation and how long did that person last?

Unfortunately there is no treatment outside of transplant for Alpha-1. My husband has the good gene/bad gene for it, and one of his brother died from it (liver failure) and the other brother is post transplant 18 years......It can also affect the lungs as well.

Hang in there! I know it's frustrating and a roller coaster ride!

Mer

Sorry, Connie....misunderstood. Hope you are doing well!

Thanks guys. I have been hanging out here for a year, but this is the first time I've posted. Actually Cleveland Clinic does do liver transplants and open heart surgery at the same time. They have been testing him for over 2 months trying to decide if he was a candidate for this, but have decided "no". Some of it is his age, no doubt, as he is 68.5 years old. But they also believe the risk outweighs the benefits. The last couple of months he has been struggling with not having an appetite. Some days all he will eat is half of an Icee. There are no calories there. He spends the majority of his time on the couch, in and out of sleep. Mom has given up on the low-sodium diet right now, just letting him eat whatever he wants so he at least eats something. Ironically,since she has done this, his MELD dropped from a 19 to a 17. My thinking is that with not eating, he's not getting anything in his system for his liver to process, so its had a bit of a rest. He had a double heart bypass last year within 2 weeks of learning of the Alpha-1/cirrhosis. One of those bypasses is still very clear and it is a main artery. The heart doc at CC told us that will give him a level of protection against death with another heart attack, but not a guarantee. We kids think his heart might survive another attack, but his body will not. We are somewhat afraid that the answer of "no" will make dad lose hope and he will decline even faster than he has already. The difference in him since last fall is unbelievable. Anyway, that's where we are at. I was half expecting the "no" answer, but it is still disheartening when you hear it for real. We are thinking of trying to take one last trip together, something small but something he would enjoy. We're going to let him call the shots on it.