Scoliosis and transplant

[VK]

Hi all,

Anybody here with scoliosis go for a transplant? My docs have told me that I’m likely ineligible because I would need the lungs of a 7 year old to fit into my tiny upper body, which has been crushed by congenital scoliosis and the aftermath of a heart surgery that left my rib cage stunted from infancy.

[Jen Cueva]

Hi VK,
I am sorry that I do not have any answers for you but hoping others may be able to help.

It makes sense as far as the lungs would need to be smaller. I am sure that this is achievable with all of the advancements that we have today in the medical realm.

If no one here can help, I can try to see what I can find out in other groups, too. I will reach out to my colleagues to see what I find out. I will get back to you as soon as I learn more.

[Jen Cueva]

Hi @azebraman, So I did receive feedback from one PH transplant patient @kathleen-sheffer, she said, “Might be a long wait but I don’t know why they would be ineligible. Don’t take no for an answer, try another center”.

Another Cystic Fibrosis transplant patient says, “I got rejected by every transplant center in America before UCSF took me on. I recommend trying them, Cleveland Clinic, Mayo Clinic, and UPenn. They take super complicated cases.”

Another coworker says, “Size shouldn’t have any effect on eligibility although it might take longer to find a donor. I’m only 4’11 1/2. When I went on the transplant list for a liver, my team warned me I might need to wait a long time because my donor would either have to be an adult my size or a child. Patients have the right to go to another and even several transplant centers for consultation and can be listed by all of them who consider her a candidate for transplant.” And Brad added “Yeah, as she said, they can take child donors and can also trim lungs to meet size requirements. Perhaps looking into centers that perform both adolescent and adult transplants would be best.”

I just wanted to offer you some hope but from others who have been through the transplant process.

[Brittany Foster]

Jen,
Thank you so much for taking the time to do the research on this. It’s so so so important to get the advice and second opinions of others. It’s even better to hear from people who have been through it before and can share their stories with all of us. I always love hearing success stories and knowing that no road was easy to get there!

[Jen Cueva]

No worries, I just felt bad that I had no experience to share. I thought hearing other’s journeys certainly can spark some hope in all of us.

[Colleen Steele]

VK, As Jen and Kathleen mentioned, size shouldn’t matter it’s just the wait might be a little longer. You might consider meeting with other transplant centers for their opinions and look into double listing to increase your odds.

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