Looking for a CV team in FL to provide answers & get his valve corrected

Posted by rpulis @rpulis, Feb 28, 2016

Family is orginally from Fort Madison, IA; recently moved to Florida a year ago. 21yr old son had his 4th open heart 2 yrs ago and just before we left they told him he would have to have open heart again to fix a booboo that was made. Their explanation was that after replacing the pulmonary valve and closing the heart it rocked to the side causing kink in the artery from the conduit making high pressure in and low out. In October UF Cardiologist did a Cath in the heart to review what was going on and how to fix because he claimed that Iowa City Hospital sent him poor information. Since the Cath he has been feeling horrible, extreme fatigue, weight loss, red patches all over his legs, coughing, nose bleeds, headaches, nausea. He has seen doctor after doctor and no real results given; cardiology, infectious diseases, nephrology…. The diagnosis he is being treated for is endocarditis and vasculitis. Infectious Diseases has not clue what the issue is. He has been in the Baptist Hospital twice now and no answers just expensive bills. Test after test, CT, MRI, TEE, all kinds of blood work. Looking for a team that can provide answers to get him better to get his valve corrected.

Hi @rpulis, welcome to Connect.
How difficult this must be not only for your son, but also for you as a parent – difficult, frustrating and exhausting. Perhaps you would like to consult with the cardiovascular team at the Mayo Clinic. Here’s information about the department, the doctors, their specialties and who is in which location. http://www.mayoclinic.org/departments-centers/cardiovascular-diseases/home/orc-20121930

Use this link to request an appointment http://mayocl.in/1mtmR63

I’m also tagging @osprey650 in this discussion. Did you end up going to Mayo in Jacksonville for treatment? @RonBraun @wilson4773 and @cynaburst may wish to weigh in as well.

RPulis, I hope we can help find answers with you.

How is your son doing?

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