A place for teens and young adults under 30 with pulmonary hypertension to connect, vent, share frustrations and ask questions. Get advice from your peers, and make friends your own age!
I have transitioned, but still work closely with my children’s team. I am actually getting my most recent surgery for my heart at the Children’s hospital. I know a lot of my friends with congenital heart defects and with PH that had it as a child, still receive their care at the children’s hospitals. In Boston Children’s , they have an adult cross over program with Brigham and Womens Hospital (the adult hospital next door) . They are literally connected by a walking bridge so it is easy to get access. I would ask your pediatric team if there are doctors that work in the crossover programs so it can be a smoother transition and they can have good continuation of care. I would also inquire about the pediatric teams that have rights to the adult hospitals and vice versa. It’s good to have doctors that can just “cross over” to the children’s hospital if they have to or pediatric doctors that are able to see you at the adult hospital if need be. Knowing that the pediatric doctors are still a part of my team is really helpful to me. Luckily, many of my specialists that I started seeing as a child also see patients as adults and follow them through with their care. Even for my specialists with my heart like my pacemaker doctor, they work closely with the adult congenital heart specialists (who work closely with the pediatric doctors that saw me as a child). Talk openly with your son’s medical team about this and let them know that if possible you want them to still be a part of his medical team. Usually they are the ones that will take over the transition process and help to make things smoother.
Thanks Brittany for your input! My son’s care is no longer PH but transplant. I think with that there is a thicker line dividing pediatric and adult care. Luckily his doctor’s have said they will keep him as their pediatric patient until he is 21, as long as he remains stable. If things get complicated then he might have to make the transition sooner. I would like for us to be prepared for that just in case.
Our big decision is whether to transition to the adult team in CA where his primary PH and transplant care has been, or switch to an adult team in WA, which is home. We have heard of patients who have done this after transplant and it was successful but it is nerve wracking to think about adjusting and trusting new doctor’s when the former one’s are not just in a different hospital, but in another state. We have had an on-going conversation with his team about this but it still doesn’t feel like there is any comfortable answer. I will be taking a lot of your advice with me to our next CA visit this summer. Your experience has given me a better idea of how to approach this conversation again.
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