Cardiac Cath results

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sarahsunshine's picture
Joined: 11/29/06
Posts: 1462
Cardiac Cath results

Well, the day finally happened…

Skyler’s doctors said at 6mo that he would probably need his prosthetic mitral valve replaced when he was 3 or 4 years old. Results of the tests, however, kept coming back that it was working fine. Well, he’s now 12, and last week he had another cardiac cath, and the results were not so good (I wasn’t actually there, DH was). The Dr. said that they are looking at doing open heart surgery in the next 3 months. They want to replace his mechanical mitral valve, and put in a mechanical aortic valve (he has aortic stenosis).

On Wednesday this week they will have a meeting and give us a plan of attack. Last I heard the idea was to do a ‘Ross Procedure’ where they remove the mitral valve, and replace it with his current working pulmonary valve (which grows with him and is his tissue) so that in the future they don’t have to do open heart surgery if they have to replace either prosthetic valve. I don’t quite understand it because any research I read on the Ross procedure says that it’s used to replace the aortic valve, not the mitral valve, so I have a couple questions about that.

In any case, it looks to be an eventful time pretty soon.

DS is supposed to have minor surgery too, to see if they can find his missing testicle….

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

(((Hugs))) I'm so sorry it wasn't better news. But he defied the odds and made it this long without surgery. I'm not sure about the Ross procedure for the mitral valve. I have however just heard of a little one that had the melody valve done on the mitral valve and was very successful. KUP

Joined: 12/01/05
Posts: 1000

Wow. That's a lot to deal with. When is the testicle surgery? Will it be done before Skyler's surgery? I hope everything goes well. It would be nice not to have to worry about him growing out of his valve.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

"wishing4agirl" wrote:

(((Hugs))) I'm so sorry it wasn't better news. But he defied the odds and made it this long without surgery. I'm not sure about the Ross procedure for the mitral valve. I have however just heard of a little one that had the melody valve done on the mitral valve and was very successful. KUP

Remember how I was giving you all sorts of advice on heart valves a ways back? I think now that you are probably more experienced than me in that regard! I might be coming to you!

I'll have to check out the melody valve. I think the hope is to fit him for adult size valves so he never has to have surgery again... ideally.

After quick lookup of Melody valve: I just looked up the melody valve and it’s a trans-catheter tissue valve. I think they are going to avoid tissue valves (not sure) because they would require later replacement for sure. On the other hand, if they are tissue, it is unlikely that he will need to have anit-coagulants (warfarin/Coumadin). That would be great for his health (not to mention his parent’s health as he becomes a defiant teen, and his bio parents disagree with medication dose as already happens). It would also mean that he wouldn't need open heart surgery for later surgery (another bonus). I wonder what they will decide on Wednesday.

Joined: 11/28/06
Posts: 848

I'm sorry the news wasn't good. I'll be praying for both your kiddos. Please keep us updated on the upcoming surgeries.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"sarahsunshine" wrote:

Remember how I was giving you all sorts of advice on heart valves a ways back? I think now that you are probably more experienced than me in that regard! I might be coming to you!

I'll have to check out the melody valve. I think the hope is to fit him for adult size valves so he never has to have surgery again... ideally.

After quick lookup of Melody valve: I just looked up the melody valve and it’s a trans-catheter tissue valve. I think they are going to avoid tissue valves (not sure) because they would require later replacement for sure. On the other hand, if they are tissue, it is unlikely that he will need to have anit-coagulants (warfarin/Coumadin). That would be great for his health (not to mention his parent’s health as he becomes a defiant teen, and his bio parents disagree with medication dose as already happens). It would also mean that he wouldn't need open heart surgery for later surgery (another bonus). I wonder what they will decide on Wednesday.

The thing I am encouraged about the melody valve is that when they have to replace it isn't open heart surgery so recovery time is WAAAAAAAAAAAAAAAAAY quicker, and the lack of anti-coagulants. Although I know tissue valves have a history of not lasting as long in kids so ???? The recovery time is HUGE for Eli. He takes SOOOOOOOOOOOO much longer to recover than other kiddos. Please KUP on what happens on Wednesday.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

"wishing4agirl" wrote:

The thing I am encouraged about the melody valve is that when they have to replace it isn't open heart surgery so recovery time is WAAAAAAAAAAAAAAAAAY quicker, and the lack of anti-coagulants. Although I know tissue valves have a history of not lasting as long in kids so ???? The recovery time is HUGE for Eli. He takes SOOOOOOOOOOOO much longer to recover than other kiddos. Please KUP on what happens on Wednesday.

Another huge thing is how they do the surgery. Typically for mitral valve surgery it’s open heart, by cutting through the sternum. But then there are other ways that are quite common these days. One of them is to go under the rib cage, another is to go through the ribs. Both drastically decrease the recovery time. How was surgery done for Eli the last couple times. It is his mitral valve, isn’t it?

Another big thing is the use of anticoagulants post-surgery. Skyler’s been on Warfarin (Coumadin, rat-poison) since he was 9 days old. It can have some serious effects in terms of calcification of the arteries, and means that he bleeds more than most kids. Tissue valves mean that you can go without hardcore anticoagulants, sometimes only the use of aspirin is plenty. With some of the new carbon fiber based mechanical valves, they are finding that it’s okay to use much lower dosed of anticoagulants because the carbon based material doesn’t act the same way as the titanium in terms of clotting. There’s even a new type of valve that will be tried on a human for the first time in about 2 months that involves surgically implanting a basic matrix into the heart, and then the leaflets of the valve attach to that matrix. If the leaflets wear out, then they are replaced without having to remove the matrix! This would be HUGE for people who are potentially looking at many surgeries down the road.

Here’s some web pages that you may find interesting:

http://www.valvexchange.com/patients/index.html#patientsdilemma

http://www.onxlti.com/2010/12/onx-heart-valve-superior-performance/

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"sarahsunshine" wrote:

Another huge thing is how they do the surgery. Typically for mitral valve surgery it’s open heart, by cutting through the sternum. But then there are other ways that are quite common these days. One of them is to go under the rib cage, another is to go through the ribs. Both drastically decrease the recovery time. How was surgery done for Eli the last couple times. It is his mitral valve, isn’t it?

Another big thing is the use of anticoagulants post-surgery. Skyler’s been on Warfarin (Coumadin, rat-poison) since he was 9 days old. It can have some serious effects in terms of calcification of the arteries, and means that he bleeds more than most kids. Tissue valves mean that you can go without hardcore anticoagulants, sometimes only the use of aspirin is plenty. With some of the new carbon fiber based mechanical valves, they are finding that it’s okay to use much lower dosed of anticoagulants because the carbon based material doesn’t act the same way as the titanium in terms of clotting. There’s even a new type of valve that will be tried on a human for the first time in about 2 months that involves surgically implanting a basic matrix into the heart, and then the leaflets of the valve attach to that matrix. If the leaflets wear out, then they are replaced without having to remove the matrix! This would be HUGE for people who are potentially looking at many surgeries down the road.

Here’s some web pages that you may find interesting:

http://www.valvexchange.com/patients/index.html#patientsdilemma

http://www.onxlti.com/2010/12/onx-heart-valve-superior-performance/

I should have been more specific. As I understand they did the little one's through a cath procedure. Yeah Eli has problems with both mitral and aortic, his aorta, and his outflow tract (I think that's what the area right below his aortic valve is called). Think Shone's Complex without the mitral ring. His last 2 surgeries have been through the sternum but his first 2 were under his arm through the rib. I actually don't like under the arm. As much as the doctors say it's less invasive when they've gone that way we've had problems. Oh and I do know of some kids who are only on baby asparin (sp?) with their mechanical valves. I was FLOORED when I heard that.

That is awesome about the new valves. Thanks for the sites. I will check them out.

Joined: 05/05/04
Posts: 435

Oh my gosh. So much going on. (((hugs)))

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Sorry I didn’t get back to you, I didn’t realize that you had responded (oops!).

"wishing4agirl" wrote:

I actually don't like under the arm. As much as the doctors say it's less invasive when they've gone that way we've had problems.

Interesting. What types of problems did he have? The doctors have got back to Skyler’s mom (not us) and she is happy with “we want to replace his Mitral valve in 2-4 months, and maybe do a Ross procedure if things look good.” I want to know more (how? With what type of valve? What size? Why? What were the results?). Why do a Ross Procedure? Fortunately his new doctor gave us his email address so DH and I will email him.

"wishing4agirl" wrote:

Oh and I do know of some kids who are only on baby asparin (sp?) with their mechanical valves. I was FLOORED when I heard that.

Really? What type of valve? I would really like to know more about this because I have a bunch of concerns regarding the high dose of warfarin…

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Sorry I just got back to this. I was out of town a lot longer than expected and didn't have access to the computer.

As for the problems Eli had, that is when he developed the chylothorax (sp?). I know it can happen after any of the surgeries, but that is the one that caused it. He also seemed to be in more pain. He also has some minor voice issues and facial muscle issues. These were actually from going under the arm (some other heart mom's whose kids had/have the same issues explained this). I really can't complain too much since they did save his life though. I think I'd be asking questions too. However, they talked a lot about some of these things before Eli's 2009 surgery and his 2010 surgery so I have way less questions now than I did before. Such as, I know when they replace they will do a mechanical valve (unless some breakthroughs they think will benefit him are available). Tissue valves do not last as long in kids as they do adults (they break down faster). I've heard their are benefits to the Ross procedure but I don't know what they are. I'm wondering if it could be the reduction in number of surgeries needed?

As for the aspirin, they had mechanical valves (not sure the exact type). I guess that is what floored me. Are you on FB? I have a couple of pages I am on for heart parents. They are amazing people some who are adult CHDers.

Again sorry it took me so long to respond. 2 weeks is a long time for me to be away.

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