short update- made it to cleveland here - staying at the international suites - the cc gave me the # to call - it was so easy. thanks for all the good thoughts and help.
i had looked at boston and chop too - but i think it's a valve prob - not specifically related to the congenital defect. had an echo today, met with the docs (they are amazing, and i'm teary just thinking about it). might be leaking or the gradient is too high - going to get a stress test and cath tomorrow to get more details. can't quite explain it - but in my gut it felt like the right place to go (for multiple reasons, but it seemed to have the best data with stuff related specifically for my issue)
quick side note - not meant as a challenge - in fact i feel like i have a steep learning curve coming - how do you classify "best" in your mind. for me it was a combination of published papers, stories from other adult congenital people, and the resources available for my age group of congenital patients (i didn't have mine initally fixed until i was 14 years old, in 1988, so this was something that cc seemed to have a lot of experience in). for me, i thought that was criteria for best. but i am sick, so i know i'm not firing on all pins right now - any feedback would help, feel free to pm me.
i know the board has helped soooooo much. getting a cath in my neck for the first time ever tomorrow - it's always been through my leg in the past - and i'm a bit freaked, so about to crash and sleep. much love to everyone!
I'm glad you are there and happy.
Since you ask, I kind of disagree with you right from the start, even tho is is a "valve" problem yours is on the right side of your heart because of your TOF Pulm atresia and everythig involved in how that effected the right side of your heart and maybe lungs growing up with a heart that is structurally different than the "normal" heart and even what other organs can be effected growing up with pressures that are different than 'normal" so that is quite different than the left side valve issue like Aortic and mitral valves that Clevelenad DOES have alot of experience in.
I believe doctors who are NOT CHD speciallist only have a short amount of time learning about CHD patients, compared to docotrs who go on to CHD fellowships.
The ACHA org has quite a bit of info on CHDs as well as the Bethesda guidlines about ACHA care and who needs "specialized" care, Your CHDs are considerred the most severe catagory,
It's interesting to me that you found many ACHA patients that go to CCF, or had surgery there, since compared to other center they really don't do that many CHD surgeries. I'm not sure if you are considerring people who have BAV, since you didnt have your surgery until you were 14, but for the most part they tend to fall into the catagory that they can be seen at the hospitals that mainly take care of adults ad aquired heart problems, since tens of thousands of Aortic valves are done each year (about 80,000?) compared to pulmonary that is closer to 5 thousand in the whole country, so alot more surgeons and hospitals have alot of experience with Aortic valves patients and Aortic vales generally arent counted as CHD experience,. CCF has ALOT of experience with valve surgeries, they did close to 3000 valves, but about 1800 were Aortic and 1400 were Mitral (some were both) left side, they didnt mention how many Tricuspid or Pulmonary
Anyway the ACHA has a clinic listing, not ranked just a place to find info, for example Boston does about 1200 CHD/ACHD surgeries that year, CHOP did about 900 and CCF slightly under 300. So not only do the surgeons have more experience with CHD hearts (and so also patients that need multiple REDOS, the leading CHD center do MULTIPLE REDO surgeries daily, at least several a week) but the rest of the staff and Units have much more experience taking care of them post-op and everything that goes along with hearts that are so much different.
http://www.achaheart.org/home/clinic-directory.aspx
But what I take into consideration when deciding which is the BEST, is alot of what you said, but I just come up with different answers than you, I think experience and published papers are very (the most) important, as long as they are related to hearts like YOURs. Most things I read related to Congenital heart pateints and ACHA patients the places with the most research, papers, experience and best results pretty much go along with all the criteria US news uses when ranking CHD centers. This year again Boston and CHOP rank 1 & 2 by quite a bit.
http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery, CCF came in at 28. One of the things that impresses me is the reputation with Specialists, where other CHD doctors consider the best as well as outcomes for complex surgeries , patient safety etc.
Well I could go on and on, but you get the point.
