Pulmonary

[DesMoines]

Here's my story. Between the ages of 14-16, I underwent three open heart surgeries. I had two donor valves put in, neither of which lasted more than a year. My doctor, at this point, suggested I go with a mechanical. It isn't as common in the pulmonary position, but he said at the time it was becoming more common, especially for people in my situation.

Cut forward to today. I'm 28 and my mechanical valve is experiencing thrombosis and needs to be replaced. He obviously said that the risk does go up with the more surgeries you have, but my pulmonary pressure is at 85 and he said that I can't go without it. My heart is in good shape otherwise, I have few symptoms, and I'm hoping that's all a good sign.

But now I have to choose what valve I want. He has suggested the porcine valve that I see spoken of on these boards. He said it is treated a different way than the old donor valves were and most likely I wouldn't reject it the way I did those... but he couldn't guarantee that to be the case.

His main concern is me needing another surgery after this one. He is suggesting the porcine because he said it is becoming possible to replace them through a catheter. (I've seen this mentioned here before.) But he also said he can't say for sure whether this is going to be a common procedure in the future or not.

The mechanical valve lasted me 12 years. If I get another one and it only lasts me 12 year, I'll only be 40 and another surgery to replace it again would be risky. But the tissue valve definitely won't last a lifetime.

I'm not concerned about coumadin. I've managed to be active, travel to Europe, etc., and don't particularly regret not playing high school football. The only issue I have is getting whatever I need that gives me the smallest chance of needing another surgery.

 

[Ross]

Welcome to the funny farm.

What valve do you have now that has the clot on it? Do they have any specified reason for it developing a clot? You've been through this too many times already. I think I'd want some solid answers before doing anything. Have you gotten a consult at one of the major heart centers? Mayo or Cleveland? I think I would in your shoes.

 

[Lynlw]

I'm sorry you've had so many surgeries, but sadly that is what you usually have to deal with when you need your pulmonary valve replaced. Since most surgeon won't use a mechanical valve because the pressure is too low that even with coumadin, the risks of a clot are too high, So you often need your valve replaced numerous times. BUT at a large CHD center, they have the most experience with pulmonary replacements AND multiple 3-4REDOS and so have the best stats, even in the higher risk surgeries.
I know we've talked before byut where are you having your surgery? Which doctor recomended the porcine, your cardiologist or surgeon? The reason I ask is because most people I know getting pulmonary valves for CHD get bovine valves, I KNOW the Bovine valves are being replaced percutaneously now. The only valves I know of that can't be replaced by cath are mechanical valves, and I'm not an expert, but don't see them being able to replace mech valves in the cath lab in the cath labs any time soon, since the have to squish the old leaflets. Right now they are replacing pulmonary valves in patients that have had previous pulmonary valves replaced, so even if it is not common by the time the valve you are getting now needs replaced, most likely it would be replaced in the cath lab.
Have you contacted any of the centers that where mentioned in your other threads?

 

[tobagotwo]

It sounds like you have an active immune system. The main difference beteen the body's acceptance of a homograft and a xenograft (pig, cow, or horse tissue valve) is that the human valve causes an immune response, and the valve is eventually "rejected," although it can have a long life in many cases. Xenografts tend to calcify over time, causing stenosis and/or regurgitation (insufficiency) in a different process, but not a classic immune rejection.

All tissue valves are affected by your body's chemical reactivity. Unfortunately, everyone's chemistry is somewhat different: some people can keep valves quite long, and others run through them fairly quickly.

It would seem that a xenograft would make the most sense for you right now (like the Medtronic Mosaic your doctor is referring to, or the St. Jude BioCor, or one of the Edwards bovine valves), as your immune response is very active. As far as I am aware, any of these could potentially be replaced by a catheter-placed valve type.

The Edwards valves and the Biocor have the longest records for implantation. The Mosaic hasn't been in use long enough to know for sure what its average longevity will be. However, the length of service life in a young person for all tissue valves is highly variable. People of retirement age can average over 20 years, but a younger person can go for much less, depending on their body's chemical reactivity.

Best wishes,