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I fell ill in 2007, I had to wait on the emergency list for the transplant because I am from group B so very rare: I was transplanted with 2 lungs on September 11, 2008 then on January 29, 2010 following a rejection of the graft: since then I have been in chronic rejection but I manage to have an "almost normal" life, the anti-rejections having caused cancer of the uterus and skin cancer. I had a hysterectomy last October and that's fine! my last sister had both lungs transplanted in August 2019 at the age of 53, I was 50 and my older sister was 36. it's the Mayoclinic!!!! who discovered that our family illness was due to a genetic anomaly and that it stopped at us thank God 🙏 so our children and grandchildren will not be affected: funny story....😌
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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.