Lindsay's Posts

Hi everyone, I was wondering if anyone can give any advice on traveling for surgery. I am now thinking of looking at different options such as Cleveland or Mt Sainai (after reading here) but that would mean traveling from North Carolina for the surgery. Duke is an excellent facility, but ranks a bit lower - and after all reading here, I feel like I might want to try somewhere else. Has anyone had to travel far for heart surgery? Also, if you have any suggestions specifically for surgeons who deal with pulmonary valve disease, I would totally appreciate that.

Hi everyone, I'm new here. I found myself on this forum in my rabbit hole spiral into really scary article world. I am 35 and was diagnosed with pulmonary valve stenosis when I was a baby. After a few repairs (15 and younger) I am now facing pulmonary valve replacement for moderate stenosis and severe regurgitation. I think terrified is putting it lightly. It's not even the surgery (long story but i'm not a candidate for transcatheter procedure) - but the long term prognosis. I am having trouble finding resources specifically about pulmonary valve replacement. I am very confused about why, at 35, my doctor is suggesting a tissue valve (is this more common with pvr - seems like the recommendation is mechanical before 50ish). I have heard/read everything from near-normal life expectancy to we don't know much after 15 years to you probably won't make it past 60 (with a tissue valve I am looking at 4 replacements - the upcoming open heart and the transcatheter for any others) in my lifetime if I am looking at a normal life expectancy. I would to talk with someone or hear from someone who can help me navigate this or just be there for or with me. Especially interested in anyone with or facing PVR. Thanks in advance for your help and support. Looking forward to reading some more of these inspiring stories.