PPH-Primary Pulmonary Hypertension - Rare Disorders Message Board

mom · 11-16-2000, 09:58 PM

I was diagnosed 2yrs. ago this Sept. with PPH. I was given 2-5 yrs. survival without transplant. I was just placed on the list awaiting a double lung transplant. I would like to hear from others suffering from PPH or PH and those that have already had transplant or are awaiting. Would like to know what you have learned regarding insurance also. Thanks in advance,Linda.

nyjt1000 · 06-12-2004, 08:33 PM

how did they diagnose it?

jpos · 06-13-2004, 12:57 PM

I am sorry to hear about your diagnosis and hope all goes well.

According to my last echo, a year ago in hospital, I have mildly elevated pulmonary pressure. (This was diag. by the TR.) I was told they would check on it in about 5 yrs., so I guess in my case it is nothing to worry about.

I don't know anything about it, though. I tried doing a search and all I came across was the PPH.