Recurring Pulmonary Stenosis

[DesMoines]

Hey, this is my first post. 12 years ago, I had my pulmonary valve replaced with a mechanical valve. For 12 years, it was fine, but last month, I found out that the pressure in my pulmonary valve was 100 (85 on the angiogram I had later), and there was a leak in the triscupid valve, which has a ring. The doctors seem to think the triscupid problem would be fixed by fixing the pulmonary valve, so right now, we're just dealing with that. I have few symptoms, just being a little out of breath. Tonight, I've been having a few palpatations, though I'm not sure if that's related to the stress I'm feeling, and the fact I'm concentrating on what my heart is doing.

Anyway, after the angiogram, I was told I was experiencing more pulmonary stenosis and it wasn't a blood clot. I will probably need it replaced again. I will meet with the surgeon again this week.

I live in Des Moines and have had my surgeries at Mercy Hospital. I know it's a good hospital for the area, but I live about two and a half hours from the Mayo Clinic in Rochester. Does anyone have experience up there? I know it's always spoken of well. Do you think the advantages I would get there would be worth it to make the trip up there?

Thanks... Any information or experience you have is greatly appreciated.

 

[Maryka]

I know some of the Mayo clinic people will soon chime in. I just wanted to say welcome to the Valve Replacement forums!

 

[Debbrn]

I am sorry to hear that you are having to have surgery again. I had my pulmonary valve replaced again 6 weeks ago at Boston Children's with a tissue valve. The pulmonary valve is replaced less frequently than the aortic valve. Ask how many your surgeon does per year, and how many are done at the hospital. I am not sure how many my surgeon did as an individual, but the hospital did 80 last year. I would definitely recommend at least talking with the docs at Mayo.

Debbie

 

[kfay]

You are the first person I've heard of who has a mechanical valve in the pulmonary position. Usually a tissue valve is used on the right side of the heart due to a higher risk of forming clots.

I had my surgery at the Mayo clinic in Rochester as well as two ablations a year later. I still go there every year for a check-up. If I lived as close as you do, I would definitely make the trip to the Mayo. I had a great experience with them. They are extremely thorough. My surgeon was Dr. Joseph Dearani, who does a lot of congenital heart disease surgeries, which I'm assuming you have and my cardio is Dr. Heidi Connolly. I can't say enough good things about both of them. If you would like more info, please feel free to pm me.

Kim

 

[Lynlw]

Like you my son has had a few surgeries done for his pulmonary stenosis. Since you need a pulmonary valve, I checked your profile, because for the most part (Unless they need on because of a Ross procedure) , people that need pulmonary valves were born with Congenital Heart Defects and usually have been having surgeries since they were babies or small children. DO you have a valve and conduit (usually dacron tube after the valve that goes to the pulm artery) Or just the valve? Most people I know that have a pulmonary valve replaced as a child also have a conduit because of stenosis in the pulm artery, but some just needed the valve.
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 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 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
I also was a little surprised you have a mech valve in the pulmonary position, I know of a couple others, but for the most part, the vast majority of surgeons who have alot of experience with doing surgery on the right side, will NOT put a mechanical valve there because because the chances of clots are so much higher even with coumadin, because the pressure going thru the valve is less than the left side (aortic &Mitral)
FWIW Justin's Tricuspid valve also looks bad when his pulmonary stenosis is high, because the blood has such a hard time getting out of the right ventricle to the lungs, the right ventricle gets enlarged and the blood backs up thru the tricuspid valve. As soon as they relieve the stenosis, either with a new pulmonary valve, or conduit and blood can leave the right ventricle, his tricuspid valve is fine.
I'm sorry this got long and rambly. If you have any other questin just ask.

 

[DesMoines]

Thanks for your input. Regarding the mechanical valve, I had two donor valves put in the pulmonary position, but I rejected them both. The pressure began going up almost immediately and, from what I remember, they began narrowing right away. My surgeon said he's only seen a few of those in his career and from my research, not many surgeons have ever seen that. I guess I was intent on not making things easy even from the beginning...

 

[Lynlw]

Thanks for your input. Regarding the mechanical valve, I had two donor valves put in the pulmonary position, but I rejected them both. The pressure began going up almost immediately and, from what I remember, they began narrowing right away. My surgeon said he's only seen a few of those in his career and from my research, not many surgeons have ever seen that. I guess I was intent on not making things easy even from the beginning...

You sound alot like Justin, always trying to be a challange as his surgeon says. (I tell him sometimes it is nice to be boring and I wish he would find something else to be interesting about When Justin got his pulmonary conduit as part of his surgery when he was 18 months old, they left out the valve, in hopes of cutting down the number of surgeries he would need until he was full grown (since the pulm valve is the one you can live with out) since he would keep outgrowing it. He got a bovine valve when he was 17 and needed his condiut replaced because of both calcification and he outgrew it. They used to give alot of Human valves, but now it is more common to use bovine valves in the pulmonary position, since they last longer since they started treating them for calcification. (either a man made from the cows pericardium , that technically is made for Aortic valves OR there also is a Contegra conduit that is actually a section of the cows jugular vein (artery?) that has a valve in it that is just used for pulmonary valve/conduits, (they are relatively new)
I didn't know much about the CHD center at Mercy, but if is the one in Desmoines, They MAY be very good, just small, but it looks like they only do 100 CHD surgeries a year http://www.mercydesmoines.org/heart/index.cfm so I probably would at least get a couple 2nd opinions, since for Multiples REDOs experience really does play a part in success.

 

[RI Mom]

My son went through a homograft very quickly too (less than 9 mos. it was more stenotic than it had been at placement). He ended up with a bioprosthetic (Hancock II) that is working out so far.

Best wishes to you!