My husband Jim was diagnosed with PPH in 1999. He had not been feeling well but when he went to the doctors they were baffled. Some said he had pneumonia, some thought he had low blood count, some thought he had lyme disease. I believe he started not feeling well in 1989. He would always get sick around Christmas. I had him start getting a flu shot and that seemed to help for awhile. Every once in a while he would say that he didn't think he was going to be able to finish walking 9 holes of golf or that he didn't think he was going to be able to finish the walk we went on. He never complained about anything else and that was years apart.

Then it seemed he was falling asleep earlier every night. I just thought it was from the few beers he'd had. He went to the doctors without telling me and they wanted to do a cat scan on him but his father had a stroke and we had to drive to Detroit which he seemed very reluctant to do. We made it there but he slept most of the way back to CT. A week later, his father passed away and we had to fly to Detroit. Well that put a delay on everything and he made me promise that I would not say anything to his family. (He told me this on the plane ride to Detroit).

After we came home, he was suppose to have a lung biopsy but something came back on his stress test and they wanted him to see a cardiologist. Well the results came back that he had an enlarged heart. He was immediately admitted to the hospital. The one doctor gave him steroids and said he would be fine but 2 other doctors said he needed a heart lung transplant. What a shock!! The first doctor gave him steroids and sent him to rehab. He continued to get weaker. I finally put my foot down and told the doctor that I wanted him to see a specialist in Pennsylvania. He said if his pressures were not down we would do that. Well his pressures were not down so they sent us to NYC Mt Sani Dr. Poon who was very good but the experience was a real eye opener. He was sent there to see if he could be put on the transplant list. Meanwhile I stayed at the Transplant for living center...another eye opener. They were very good there I must say.

Anyway, after 3 weeks there they sent him back to CT where I was told he would be in the hospital for 2 years waiting for a transplant because none of the nursing homes around were able to treat him with the Flolan. Needless to say we both knew we were fighting a useless battle. We knew nothing about this disease and everything we tried to find out about it was very scary and depressing. I went home every day and cried my eyes out. Needless to say he continued to go down hill until he passed away 3 months later. I still can't believe he's gone. I wish I had been better informed about this disease. I'm not sure there was anything that could be done for him at that time. It was just terrible and happened so fast that when I think about it now I wonder if there could have been more that I could have done. I keep reading about this disease and hope my boys will not inherit it.

I wish I could've done more. I can only say that I still miss him dearly and hope that he is in a more peaceful place.