My daughter needs a heart transplant: Who to ask at Mayo Clinic?

Posted by krisyd13 @krisyd13, Oct 19, 2022

My daughter needs a heart transplant but has a Col4A1 gene that keeps having doctor's saying no. Someone said their daughter has the gene and mayo in Minnesota did 4 open heart surgeries for her. Does anyone know who I can talk to about finding more answers on if my daughter can have this surgery and or someone willing to do it...

Interested in more discussions like this? Go to the Transplants Support Group.

Lori, Volunteer Mentor | @loribmt | Oct 19, 2022

Hi @krisyd13 What a stressful time this must be for your daughter, you and the rest of your family. Especially when your daughter’s situation is critical with no answers… I’ve looked through our forum and can’t find any related discussion at this time.
I’d like to bring @danab into the conversation. He’s a fellow mentor who has had a heart transplant. He may be able to offer you assistance. He had his transplant in Phoenix. There are 2 other campuses; Mayo Rochester and Mayo Jacksonville.

But I’d encourage you to request an appointment with Mayo Clinic. The link I’ve posted in this comment will open on the Mayo Clinic page where you can initiate a request for an appointment. The coordinator who answers the phone will take your information and then direct the request to the correct department. You should hear a response within 3 business days.
http://mayocl.in/1mtmR63

You don’t need a referral from a doctor but in your daughter’s case it might be helpful to have her cardiologist tender a request on her behalf.

Would her doctor be willing to do this? How old is your daughter?