My son was lucky to have an amazing pulmonary hypertension team. They were the whole package by caring for him both physically and emotionally. His PH doctor was with him the day of his transplant, answering questions and keeping him calm. Then he came out of surgery no longer having PH, and therefore no longer under the care of that team. It was a bittersweet experience.
He has stayed in touch with his PH doctor and nurse. Whenever he is at that hospital he makes a point of stopping by to visit them. When he has exciting news, like graduating from high school, he makes sure to let them know. It’s important to him and our family that the PH team knows how much we still appreciate and will never forget them. I think the fact that we do that means a lot to them as well.
What emotions did you experience after transplant when you no longer needed your PH team? Have you stayed in touch? If you are listed for transplant is this something you have thought about and if so, how does it make you feel?
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