Repeat Surgery

[DesMoines]

Well, I received the news today that I will be needing my pulmonary valve replaced... again. Right now, I have a mechanical valve. I was hoping it would last forever, but I guess I'm not one of those lucky ones. I was wondering what your experience is with repeat valve replacements. This will actually be my fourth valve. My body rejected two cadaver valves when I was 12 and 13.

Like most of you, I'm sure, when I found out, I started looking it up, and it got me worried about the prospect of having a repeat surgery done, especially with a mechanical valve. Do any of you have experience with this?

Are there any hospitals that specialize in this kind of thing? I was a kid when I had the other ones done, so I'm not really familiar with the different heart centers around.

It's not an emergency, exactly, which I read is a good thing for repeat surgeries... I'm having it done at the end of August right now. So I guess I've got a little time to investigate things.

 

[Lynlw]

You should be going to one of the larger CHD and or Adults with CHD centers. They have the most experiences with CHD surgeries and multiple REDOs.

 

[DesMoines]

Do you know which places these are?

 

[Debbrn]

I just had my pulmonary valve replaced at Boston children's by Dr. Mayer. It was my 4th heart surgery and the 3rd time my pulmonary valve had been worked on. I had my pulmonary valve removed when I was 6, then I had a cadavar valve put in when I was 25, then a CE bioprosthetic valve (bovine) put in 7 weeks ago at the age of 44. Dr. mayer said that the hospital had done 80 pulmonary valve replacements last year. He also said that if the surgeon is slow and careful that repeat surgeries are no more risky. My surgery took 8-10 hours including putting in all the lines, the pulmonary valve replacement and the tricuspid valve repair. I was out of bed into a chair the next morning connected to at least 8 things.

I would definitely go to a surgeon that is very experienced with repeat pulmonary valve replacements.

Feel free to ask me any questions.

Debbie

 

[Lynlw]

Do you know which places these are?

I hope you don't mind me just copying these from our last thread. I type with 2 fingers so it takes a while. Were you able to check out these links?
also If you have any other questions just ask.

"I definately would check the Mayo if I lived as close as you do, as mentioned most surgeons, don't have much experience with pulmonary valve replacements, except IMO Congenital Heart Defect surgeons. (out of about 100,000 valve replacements each year only about 5000 are pulmonary) Also since this will be a multiple REDO surgery, you should make sure the surgeon has alot of experience doing MULTIPLE REDO surgeries, which can be trickier, but IF you go to surgeons who do lots of them, in MAJOR CHD /Adult with CHD Centers (which are NOT the same top hospitals for Adult heart surgeries, for example Cleveland always tops the adult heart center list, but usually isn't in the top 20 for CHD) Here is a pretty good list http://health.usnews.com/best-hospitals/pediatric-rankings/heart-and-heart-surgery (link didn't work, this is a new one) that beside ranking them, also give good info into each centers, You REALLY SHOULD be going to an Adults/with CHD or larger CHD (most of the adults with CHD surgeons also are CHD surgeons) center.
IF you haven't found the Adults with CHD Org I think it would be a good place to start out, they have a listing of every Adults with CHD center, that breaks down how many patients they see, surgeries (they list all ACHD centers, do NOT rank them or say which are better, just provide the info the hospital turns into them) ect http://achaheart.org/resource/ They also have a really good forum, like here that is pretty active and members are really helpful, I know a few use Mayo and really think the care and doctors are wonderful.
Centers and specialists for Adults with CHD is a relatively new field, since it has only been in the past 30 or less years that the babies with the really complex CHD were surviving childhood so could be making it to be adults, So many adults that have had surgeries their whole lives go to CHD centers, since they are the surgeons and staff that have the most experience, (and most ACHD centers are part of a CHD center use the same surgeons ect) which are usually in Childrens hospitals but they treat Adults with CHD also, Justin is close to your age (he is 22) and when he had his last surgery at 19 he goes to the Adult with CHD center at CHOP and University of Pa (they are completely different hospitials but are right next to each other and joined together for the Adult with CHD program) he had a choice which hospital to have it done at and picked CHOP because he likes it better (cheerful, lots of video games ect) every time he is there there are a few adults having their surgery there. a good place to find a listing of all the CHD centers is http://tchin.org/cardiology/index.htm#CS02

 

[Lynlw]

Debbie, were able to ask Dr. Mayer how his work is going on the tissue engineered valves? THAT is my big hope for the future

 

[Debbrn]

Lyn,

I did not have the opportunity to talk about the tissue engineered valves. He was not in a talkative mood when we talked. I also completely forgot about it with my nerves about the surgery.

Debbie

 

[Philip B]

Reop

Reop

Sorry to hear that you've got to go through surgery again. Your experience confirms the fact there are no guarantees regardless of what kind of valve you choose.

Do take your time and find a surgeon who has experience with reops.

-Philip

 

[mainframe]

Debbie, sorry you have to go through another surgery. Not fun whether your first or fourth. I considered Cleveland Clinic and Stanford. Cleveland Clinic couldn't fit me in the timeframe I needed so off to Stanford I went. Lyn's provided some good links, check it out.

 

[Luana]

CHD, congenital heart defect. The sticky for acronyms lists CHD as coronary heart disease, two very different things. Maybe that definition could be added, too?

 

[nngbwh]

Sorry to hear you are going through another surgery. I totally agree with the other shop around for hospital and surgeon.
Make sure you have the best. Good luck and keep us updated.

.... and Welcome aboard.

 

[Lynlw]

CHD, congenital heart defect. The sticky for acronyms lists CHD as coronary heart disease, two very different things. Maybe that definition could be added, too?

I always thought it was very confusing too, sorry I try to write the whole thing out at least once when ever I'm talking about CHD, but I missed