Tissue valves for double valve replacement?

[JTPullman]

My 15-year-old son will have surgery within the next few months to replace diseased aortic and mitral valves. The doctors and surgeon are recommending mechanical valves. I am wondering if anyone close to his age has had both aortic and mitral valves replaced with tissue valves? Or if it is an option to repair the mitral valve and perform the Ross procedure to replace the aortic valve?

The reason for asking is to avoid anticoagulation therapy and thereby continue participating in sports.

The diagnosis is still not certain. The doctors initially thought the diseased valves were caused by rheumatic fever, but then thought it might be congenital. The aortic valve leakage is moderate to severe, and the mitral valve moderate. Surgery is recommended because of an enlarged left ventricle.

THANKS ahead of time!

Jean

 

[tobagotwo]

My understanding of the history and technology of tissue valves and the consequences of his youth make me feel that it is unlikely that tissue valves, particularly the mitral, would last more than ten years tops at his age. They could even last only half that.

Chemical reactivity in children tends to make them run through xenograft valves very quickly. Children's bodies assault these valves aggressively, and despite the advances in tissue valves, I have to think that they cannot hold out for a reasonable useful valve life. The use of tissue valves for him would most likely lead to too many surgeries to be the best approach.

As a suggestion, you can ask about On-X valves for both. That may lead to a lower INR requirement in the future. However, with a double replacement, it's not very likely that he will qualify for aspirin ACT, even if it is eventually approved for On-X aortic valves in the future.

I wish I had something more positive to offer. I'm certainly not the only opinion, nor could I be aware of all of the facts from reading a post.

Best wishes,

 

[Karlynn]

Welcome Jean! I'm glad you found us. What sports does your son participate in? I ask this because there is a lot of misinformation about anticoagulation therapy (warfarin/Coumadin) and it would not prohibit all sports. Contact football wouldn't be a good idea. And there are some sports where people hold differing opinions.

Tobagotwo is pretty much our resident lay-expert on tissue valves and I'm glad he posted right away for you.

When were your son's valve issues diagnosed?

 

[Mb]

Hello:

My husband has two mechanical valves. He was told that they do not put tissue valves as replacement valves in the mitral position, if they have to replace both valves. We had been hoping then, for a repaired mitral valve, and a tissue aortic valve. It did not work out that way. Unfortunately, the leakage of these two valves masked the severity of his leaking tricuspid valve, and that remained unrepaired. It has now progressed to severe regurgitatioin. Now, perhaps your surgeon will think differently, but I thought I might add this information. - Marybeth

PS - He also said the Ross was a No Go.

 

[Mb]

He was 55 at the time. - Forgot to add this!

Marybeth

 

[JTPullman]

Thank you

Thank you

Hi, this is Nate, the fifteen year old who's getting the surgery done. Thank you so much for all the information and different stories, they will have an effect on the type of surgery. Right now we are leaning towards the mechanical valves. It is a hard time right now , knowing that this surgery will pretty much change my life, please keep me and my family in your prayers. Also feel free to send us advice and information.
I do have a question. My doctors say I might be able to play basketball next season after the surgery. I want to know if the effect of the surgery would slow me down and tire me out easier, or would I still be like I am today. Thanks that's all from me but my Mom still has something to say,
God Bless,
Nate

Thank you!! Karlynn, I am so glad to "meet" you and Twobago and Mb. Reading your replies is overwhelming. It is so good to know we are not alone in this!

You have helped us settle on the fact that tissue valves are probably not an option for Nate. I realize you are not medical experts, but I wasn't sure whether our doctors and surgeon were being too conservative.

In regard to sports and the Coumadin therapy, any information you have would be appreciated. I guess I am more concerned now about other aspects of the therapy as well. Nate was diagnosed in November last year.

Mb, it was a little scary to hear about the tricuspid valve leaking. Will your husband have another valve replacement soon, and is that something we should ask our doctors about?

Jean

 

[Lynlw]

Hi Jean and Nate!!
I wanted to let you know my son is 17 (18 in april) and just had his 4th OHS surgery last may. Justin is really good at talking to other kids If nate wants email me and i'll give you his AIM screenname if it's ok w/ mom. Justin has a tissue valve so doesn't know about coumadin, but he has been dealing w/ the heart stuff all his life (his first surgery was at 10 days) here's a link to his page, I really suggest you set one up if nate doesn't have one, it's so easy to give up dates and get messages from friends when in the hospital, caringbridge (and another site is carepage) are free for families having medical problems. well it's late so I'll be off, but i'll check tomorrow. Lyn www.caringbridge.org/nj/justinw
ps Justin always has alot more energy after his surgery, actually a few weeks after his last one he called me on his cell just to tell me he was running and wasn't out of breath, he felt so great

 

[Karlynn]

Hi Nate, welcome to you too!
If you are feeling good now, I would say you have a pretty excellent chance of playing basketball a year from now. Even if you aren't feeling totally up to speed, I would also take an educated guess that you have a very good chance of proving your doctor right. Take a look at our Active Lifestyles forum. We have marathoners, triathletes, bikers, rowers etc.

Hi Mom!
We have the Coumadin users best gift right here. It (he) is our member Al Lodwick. He is a pharmacist, a registered anticoagulation specialist, runs his own clinic and travels widely, speaking to medical professionals on warfarin (Coumadin). He posts here frequently, under the name 'allodwick'. He also has his own site www.warfarinfo.com that has a ton of invaluable information. We hear lots of crazy myths here about Coumadin. (Never use a regular razor again, only use butter knives to cut things, never eat anything green ever again, even green jello etc etc). It a serious drug, that needs to be taken seriously. But it is a life-saving drug, not a life-taking drug. Many of us home test and some of us even do our own dosing. (If diabetics can, why can't we?)

I'm sure I could provide more information, but I just got home from our niece's wedding and 3 hours of dancing has worn me out a bit. Prior to my valve replacement surgery, I would have considered myself lucky to feel good enough to go and just sit at the reception. My feet are punishing me now for dancing in 3" heels.

 

[gijanet]

Welcome to the group!

Welcome to the group!

I'm so sorry that you have to be here, but this is a wonderful group of people who will stay by your side through the whole ordeal.

I understand your reservations about coumadin. I hate that my five year old is on coumadin, but I love the fact that she is still here with me.

I, too, confronted our surgeon with the "are there any other options" question. He said that tissue valves are an option, just not a good one for Katie. One, her age. Tissue valves calcify very quickly in children. He said that we would be very lucky if we got five years out of it. Two, the position. (Katie has a very unusual valve. It's called a common AV valve; her mitral and tricuspid valves are actually merged as one, but it is treated like it is her mitral valve.) Surgeons rarely consider placing tissue valves in the mitral position due to the immense pressure it is under. Having said that, we have one member on here, Debora, who has had three tissue mitral valves. She is now 40 and getting ready to have her fourth surgery and she wants to go tissue again.............so it can be done, if you really want to pursue that.

Nate, your attitude and courage are commendable. They will help get you through this. And coumadin, if that is what you end up on, is not the end of the world. We have a home test unit to check our INR. We actually check less frequently than diabetics. Katie is a little hellion, and her energy is boundless. We do stay one big bruise, but that is because she feels so good and is so energetic.

Jean, ((((hugs)))). I know this is so scary for you. If it makes you feel better, get another opinion. Ped surgeons (at most of the big ped heart centers) don't charge a dime for "second" opinions. We have sought out numerous additional opinions and were never charged a dime............not by Boston, UofMichigan, CHOP, TX Children's, or by Dr. Mee in Cleveland (since retired)..............but we were charged by our home institution..........go figure! If nothing else, it would give you peace of mind. With Nate's being 15, you might want to consider some of the better known adult institutions, but my understanding is that they charge for those opinions. YOu also want to get to know another Jeanne on here (JeanneImp). Her son Matt has two mechanical valves -aortic and mitral, too. Her son is currently in London for Spring Break and she posted a note under the small talk forum. If she doesn't pop in here soon, give her a shout.

Many hugs and keep us posted. Janet

 

[sylviayasgur]

hi jean and nate,
welcome to this site. you must be feeling better just knowing that there are so many others in your shoes, right?

i think everyone here has pretty much summed it up. maybe asking some of the top ped.heart surgeons the same questions you posed to us and seeing how their responses concur or differ from one another is a good idea.
i do agree, you should see several.

i also think it's a great idea for nate to speak with justin (lyn's son) so that he might get another take on tissue vs. mechanical and having numerous surgeries. he should also talk to a young adult who takes coumadin as well.

my husband is the patient here and i found that to be so difficult. i cannot even imagine how some of you handle a child going through this.
i think my saving grace would be that this is a "fixable" thing, thank God.

please know that we are all here for you. come back and pls keep us posted.
stay well,
sylvia

 

[tobagotwo]

The issue with the mitral valve is not pressure (although it may be otherwise in Katie's non-typical case). The problem is that the blood gets to "rest" there briefly.

Lack of movement encourages blood to clot, which is why the carbon (mechanical) valves require higher INRs for the mitral position (meaning that the blood is more anticoagulated to avoid clotting).

More importantly, that tiny respite allows chemicals in the blood to react with the surface of a tissue valve. This creates an opportunity for chemicals in the blood to begin to coat the valve with the mineral apatite (a mix of calcium, phosphorus, and oxygen, with a small mix of other impurities thrown in). Because of this, tissue valves don't last as long in the mitral position.

This is referred to as calcification, and it takes years to get to a point where it really interferes with your heart enough to matter. It makes the valve inflexible, so the heart has to pump harder and produce more pressure to push blood through it. It also keeps the valve from opening all the way. This narrowing of the valve opening is called stenosis.

The apatite also grows in lumps at the edges of the valve cusps, much like the white or brownish calcium deposits that build up on a shower head. So the eges of the valve no longer seal tightly, letting blood leak back into the heart chamber after the heart's pump (beat) is complete. This is called regurgitation, or sometimes insufficiency.

These are not exactly the same things that cause an original mitral valve to fail, but a replacement mitral valve is basically a large aortic valve, so it fails like an aortic valve does.

I apologize for using the terms "child" and "children," Nate. It's a generalization, and not aimed at you. As a teenager though, your body is still astonishingly reactive. This is generally a good thing, as it helps to actively restore and protect your body after you've treated it roughly. For instance, if you get foreign matter deep into your skin (such as a young soldier with an unremoved bullet), it's often coated with apatite and then enclosed in fat after a few years. Unfortunately, your body's chemicals don't know the difference between that and a tissue valve, and they will coat it as well. Because your chemistry is so very active at a young age, it is aggressive in coating the valve leaflets.

They are improving tissue and carbon valves all the time. Tissue valves are lasting longer than they did before, due to treatments to reduce calcification. Carbon valves are coming closer to not needing warfarin (Coumadin) to keep the blood from coagulating (clotting) on and around them.

But they aren't there yet. And it takes years to test each new step. I couldn't wait for more progress, and I guess neither can you. But what's there now is really pretty amazing. Twenty-five years ago, you wouldn't have been wondering which valve to get. Instead, you'd have been wondering if you'd live through the operation. We've come an awfully long way.

You'll do well, Nate.

Very best wishes,

 

[Mb]

Hmmm....In answer to your question, his cardio is attempting to manage the tricuspid leakage conservatively for as long as possible.

In retrospect, his old ehco's did show a mild to moderate leak. The severity was masked, however, with his severely leaking mitral and aortic valves. My husband also has chornic a-fib, which often goes hand in hand eventually with rheumatic fever. All of that being said, if it were my son, I would ask that they take a VERY close look at the tricuspid before, during and before the close him up. If he needs an annuloplasty, or a valve, that is the time to do it. I would really be mindful of this.

Marybeth

 

[gijanet]

Thanks, Bob!

Thanks, Bob!

Not to hijack this thread, but I learn something new on here every day.

Our surgeon did mention that Katie's common AV valve was under immense pressure. It makes sense now why this is only true in Katie's case. She has two ventricles pumping blood through one valve to circulate throughout her entire body, drain to her lungs, then into her heart, and then the whole cycle repeats. I simply "assumed" (yeah, don't say it........ I already know what they say about assume.) that this was true of all "mitral" valves and that was part of the reason why a tissue valve was not a good choice in that location. As usual, I put two and two together and came up with five. Now I understand that the immense pressure part probably had nothing to do with valve choice, just why her repair most likely didn't hold up the first time. THanks for taking the time to square me away and explain all of this. I also never knew why valves calcify more quickly in the mitral position, just that they did......... I really miss our old PC. He would have set me straight from the get-go! Many hugs and thanks again for filling the void. J.

 

[JTPullman]

oops

oops

Oops--did my first reply come through? I pressed the wrong key and ended the reply prematurely. Hopefully Nate will be able to get on tomorrow after school. He has one friend who had a tissue replacement also, but I know he would love to hear from other teens.
More later . ..
Jean

 

[JeanneImp]

Hi Jean,
My son Matt(19 yrs) has mechanical mitral and aortic valves since he was 9 yrs old. Because both had to be replaced, we did not have an option of choice.

It took a while for him to get used to it. We weren't told about the clicking. But that only lasted a short time and he is so used to it now that he does not hear them... I still do! He did have to give up contact sports but he found other interests. Basketball was ok'ed but Matt didn't like it. Skateboarding, music, he plays guitar and teaching himself drums and keyboard. He pretty much does a lot. He is doing ok and right now in England on Spring Break.

Maybe Nate can hook up with Matt online??

This is the right place to be. It has helped me more than one can imagine.

MaryBeth, Matt's tricuspid has a small leakage too. He is going in for a cath in May.

 

[Mb]

Jeanne -
I do not mean to hi jack this thread. I am wondering what prompted the heart cath. Is it due to the tricuspid? My husband's graduated to severe at leat two, maybe three years ago, and he has never had to have a cath. Of course, his echo 6 months ago didn't sound so great, but still his cardio did not order one. He is turning 60 this year though......and so far, things have been managed OK with the meds.

Marybeth

 

[JeanneImp]

Marybeth,
It's been 10 years since his last surgery and the pressure over his mitral valve has increased. :-( The last echo in January was when the decision to cath was made. I am so hoping that his valve is ok and does not have to be replaced.

Matt is med free except for Coumadin!

 

[JTPullman]

Tissue valves for double valve replacement? thank you!

Tissue valves for double valve replacement? thank you!

Obviously my first reply did not come through. I just wanted to say THANKS so much again to Bob H., Karlynn, Janet, Lyn, Sylvia, Jeanne, all of you. Every one of you has helped immensely. Bob, nowehere else have we found specific and thorough information in terms we could understand, and we are now at peace about the choice of mechanical valves for Nate. Karlynn, thanks for the information on Coumadin and the web site! I LOVED hearing about the three-hours of dancing!

Hearing your stories has made me see how fortunate we are. Katie, Justin, and Matt with multiple open heart surgeries, and so many with such complex problems. Janet, Jeanne, Lyn, Marybeth--you are all pretty incredible. I am newly grateful that Nate's case seems very simple and straightforward.

As Nate says below, he would love to contact Justin and Matt. Jeanne, online would work great, and Lyn, THANKS for the advice re setting up a page. Nate is much more savvy with this than I am, so will contact Justin himself.
We will probably try to talk to another pediatric surgeon as you advised, but thanks to you all, it is clear that mechanical valves make the most sense for Nate. You are so right that the bottom line is having him around.
Marybeth, we will be sure to ask the surgeon about the tricuspid valve.
More later I hope. Our entire family has been battling fever-cold-cough thing right now.

Jean v

Hey, this is nate, thank you so much for all the encouragement and information you guys are giving us, we wrote only a few things and pages of replies came through. I am thrilled and excited to have you all by my side supporting me through this difficult time. boy do I sound like the president or what? O.K. I have another question, I heard a rumor that I won't be able to ride rollercoasters cause of the g-force. I was wondering if that was true. It's neat to hear about everyone and their backrounds. I think that talking w/justin and matt would be great. Thank you so much for all you've done to help me and my family. God Bless,
-Nate

 

[tobagotwo]

The rollercoaster thing is malarkey, Nate. If you were over 70 with fragile blood vessels and on warfarin, it might be concerning.

Unless there is reason to believe that the ride is so damaging that it causes spontaneous intracranial bleeds, there should be no problem, so far as I know. And if it caused blood vessels to burst in the brain, the ride wouldn't stay open very long...

Best wishes,

 

[gijanet]

Cute one, there...........

Cute one, there...........

boy do I sound like the president or what? -Nate

Nate, cute one! As Bob said, the roller coaster issue is probably moot in your case. As Jeanne and Lyn can attest, this does come up repeatedly on the ped heart groups. There has never been a clear consensus as far as I could tell, but as Katie is still a few years from being roller coaster height, I have to confess I have not given it my undivided attention. The questions that arise pertain to arrythmias and pressures. (Ya have to keep in mind, too, that on the ped heart groups, some of our kids have many complex heart defects. Some kids stay alive simply due to pressure regulating their circulation. The pressure in Katie's heart, for example, must remain higher than her lungs or she won't be here. It's as simple as that. Her heart pumps her blood to her body, and then it circulates and then drains to her lungs. It is not pumped to her lungs by her heart. BUT this is not so in your case.) Since your circulation is "normal," (and should be much better post-op as your heart will be beating much more efficiently) this "should" not be an issue. Should you develop arrythmia problems post-op for some reason, this could be a whole 'nuther can of worms.

The bottom line is..........."Can roller coasters bring on arrythmias in a heart that is already at high risk of developing arrythmias, and can roller coaster rides wreak havoc on a complex heart kid's pressures in both the heart and lungs?" Dunno..................There was a kid who died at Disney World last year on one of the rides. Lyn and Jeanne, correct me if I'm wrong, but I believe he had an undiagnosed heart defect.............so the jury is still out. I would pose this question to Matt and Justin, just to be safe, as they are closer to your age.............and your card certainly wouldn't hurt either! Your mom does pay him the big bucks for a reason, but I am quite sure that he/she is going to defer this to your post-op followup.

Jean, awwww.......shucks! Thanks. Many hugs to you, and, I promise, we will get you through this. Your nerves will become very frayed the closer to surgery, so just accept that and plan for it. Mark it on the calendar and block off the entire month before Nate's surgery..........just simply write in "Mom is a basketcase............'nuff said!" Your mind will come back to you, but I assure you, it is a slow process...............sigh!

Many hugs. J.