Lindsay Beth - Heart Valve Journal

My Journal

1193 days ago

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 ...Read more

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.

John Hannon Hi Lindsay, I traveled from Alaska to Omaha and then to Cleveland for my first surgery. If you feel ... Read more

John Hannon Hi Lindsay, I traveled from Alaska to Omaha and then to Cleveland for my first surgery. If you feel like you might want to then I'd say yes, get a second opinion somewhere else and Cleveland would be a good choice. If you have the option of having someone to drive you I'd go with that. We did it in January between Cleveland and Iowa, in a borrowed SUV, and it was very cold but totally manageable. The hardest part was that I was supposed to walk every hour and there was ice everywhere so that was kind of tricky.
Cleveland has an online site where you can submit your info for a second opinion but if you can convince Duke folks to handle that correspondence then I'd do that. Once they look at your info they can schedule you for a procedure. Then you go there and they run all the same tests you've had at Duke and decide what to do at that point, i.e. you only need to travel there once - that's my experience anyway. I went there once and then got a second opinion there for my second surgery and wound not going there for some other logistical issues.

Deena Z Lindsay, I also narrowed my surgery down to Cleveland Clinic or Mt Sinai. I live in Virginia and c ... Read more

Deena Z Lindsay, I also narrowed my surgery down to Cleveland Clinic or Mt Sinai. I live in Virginia and choose Mt Sinai, because Dr. Adams, the surgeon, was so renowned for mitral valve repairs. Also had my tricuspid repaired. The drive from VA to NYC is only four hours, so it was not too long. On the way home, we stopped twice so I could walk a bit, as instructed. Either hospital is excellent. If you interview the surgeons at both, you will probably know in your "gut" which one you prefer, with the logistics being secondary.

Lindsay Bethposted an update

1194 days ago

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 ...Read more

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.

Sara Latina HI Lindsay! Welcome to an amazing group. I am scheduled for Ross Procedure in 2 weeks! This group ... Read more

Sara Latina HI Lindsay! Welcome to an amazing group. I am scheduled for Ross Procedure in 2 weeks! This group has been my saving grace in preparing for it. I actually only heard about the Ross Procedure and my surgeon through this group. If not I would have been stuck with only a mechanical valve as an option. While I cant help you out specifically to PVR (mine is the aortic - they will take my pulmonary valve and move to aortic position and then give me a cadaver pulmonary valve) I am here to talk and listen about this scary adventure we are all on.

John Hannon It seems the info is sparse on outcomes after 15 years because they don't follow up more than 15 year ... Read more

John Hannon It seems the info is sparse on outcomes after 15 years because they don't follow up more than 15 years in my experience so it's kind of word of mouth. I got regular surveys from Cleveland for 15 years and then nothing. Now after I had a second surgery they followed up again with a new survey - they were aware I had the surgery though I didn't go there.