Replies to the disease is called primary pulmonary capillary hemangiomatosis, at first doctors thought of pulmonary arterial hypertension….

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Transplants | Last Active: Feb 13, 2023 | Replies (34)

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@virginiefrance

the disease is called primary pulmonary capillary hemangiomatosis, at first doctors thought of pulmonary arterial hypertension. it's an orphan disease that has no treatment apart from the transplant: my eldest sister had a heart and lung transplant at 32, I had both lungs twice at 50 and my youngest sister at 53 also had both lungs. my older sister died of a stroke in 2011.

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Replies to "the disease is called primary pulmonary capillary hemangiomatosis, at first doctors thought of pulmonary arterial hypertension...."

hello1234 | @hello1234 | Feb 12, 2023

@virginiefrance 🥰
What an amazing personal story.
It's incredible that Mayo was able to identify the family genetic anomaly and give you comfort that it was not passed to the next generations.
All that said, you have demonstrated such courage and resilience through each challenge that was sent your way.
You have a wonderfully positive and powerful mindset. Can you give me any words of wisdom regarding how you stay positive during the challenges presented during the transplant journey?

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