Primary Pulminary Hypertension - AKA - PPH

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Hello all, I am trying to find people that know about PPH. My grandmother was diagnosed with this about ten years ago. I am wanting to learn all I can about it. I know it is a uncommon lung disease and there is no cure. The only thing I know of that causes it is dietary suppliments. There are treatments but the only cure is a lung transplant or in my grandmothers case a double lung transplant and the life expectantcy is only 4-6 years if all goes well but there is a possibility of PPH returning in the new lungs. My grandmother was on the list for lungs for about 6 years and then they took her off because of her age and her health began really deteriorating. They have had her on flolan this whole time and it has caused her spleen to become enlarged and is holding 90% of her blood. She is too sick to under go surgery so they are shooting it with radiation to kill off the spleen. She has also just been diagnosed with leukemia in her bone marrow. The flolan is given to her 24 hours a day t through a groshon or however you spell it. If she goes 5 minutes without this medicine her lungs will collapse and if nicotine is mixed with this medicine it will act as a poison and kill her. This is about all I know, if anyone has any info or can relate to this please share. Thanks.