Mended Little Hearts Open Forum

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  • 1.  Looking for answers: Mitral valve replacement: Animal v. Mechanical

    Posted 02-23-2018 14:11
    Hi everyone,

    My 17 month old daughter is about to go in for her 3rd open heart surgery.  This time they are going to repair or replace her mitral valve.

    Her cardiologist has suggested the mechanical valve because of longevity.  But from what we understand, it would still need to be replaced in possibly 8-10 years.  With that she would have to be on blood thinners for the rest of her life.

    My husband and I are leaning toward the animal (pig) valve, because it doesn't require the blood thinners.  And while it would need to be replaced sooner, she wouldn't have to be on blood thinners while trying to have a somewhat normal childhood.

    Has anyone gotten one v. the other?  Wished you had gone with the one you didn't choose?

    Her surgery is coming up rather quickly so we are trying to be the most prepared we can be.

    Right now, animal is winning because at this young age, both would have to be replaced no matter what.  Also, I'm hoping that the transcath mitral valve replacement will be more common place by the time she would need her next valve replacement.  It seems to be moving in the right direction.

    I've never posted on here before, but I'm desperate for feedback.  The thought of going against what her cardiologist recommends is terrifying, but I feel like it may be the best option for now...because she is so young.

    Thanks so much for your help,

    Christina




  • 2.  RE: Looking for answers: Mitral valve replacement: Animal v. Mechanical

    Posted 02-23-2018 15:18
    Not sure where you are getting your information. By all means check further but here's my understanding about valves...

    The mechanical valve is technically able to last a lifetime. That being said, I'm not sure if they'd have to replace it once or twice as she grows. Yes, the mechanical valve would require she be on a blood thinner such as coumadin for life. Some rather unpleasant stuff and requires frequent monitoring of her blood.

    My Mitral valve was replaced with a tissue (Bovine) valve which is projected to last 10 years. Mine is 11 years old but we know that it's smoking and squeaking, has developed prolapse and stenosis. In my case I cannot have more surgery, guess they don't think I'm worth the cost.  I take 81mg aspirin and Plavix daily to reduce the risk of blood clots and requires no monitoring.

    Good luck

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    Warren
    TucsonAZ
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  • 3.  RE: Looking for answers: Mitral valve replacement: Animal v. Mechanical

    Posted 02-23-2018 17:06
    Hi!  Thanks so much for responding.

    Insurance won't cover another surgery for you?  Or are the doctors saying it is too risky?  Either way, I'm so sorry.

    Her cardiologist said it would need to be replaced in about 8 or so years if we go with the mechanical, and maybe 3-5 if we go with the bovine, like you have.  We are just so worried about her growing up and living out her life on blood thinners.  As you said, there is a lot that goes with that.  If she were in her 20s or 30s it would make sense to us...but being so young, I can't seem to justify it.  Now if it were to last 20 years...maybe that would be a different story.

    So I will be sure to follow-up with the doctor to see why he thinks it will need to be replaced in 8-10 years.  I was originally thinking her growth...but I need to ask.

    Thanks so much!

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    Christina
    Cincinnati OH
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  • 4.  RE: Looking for answers: Mitral valve replacement: Animal v. Mechanical

    Posted 02-23-2018 18:27
    Chris, I'm not sure why your doctor is quoting such short lifespan for valves. I did some research verified that as my surgeon said average lifespan for a tissue valve, Bovine (cow) or Porcine (pig), is 10 years for older patients and 14 years for patients under 65. The mechanical valve as I said is expected to last a lifetime. That being said of course that can vary but those are the averages. In my case, doctors don't want to ruin their batting averages and refuse to perform the procedure. I believe the surgeon said my warranty has expired anyway so no sense wasting a perfectly good valve.

    Tough decision for you with a child. I can see logic with both choices. I would say that there are constantly new developments in the world of heart disease. In the 11 years since my overhaul they've had so many advances it's incredible so that's something to bear in mind. They are currently beginning to implant mitral valves intravenously, ie no open heart surgery so less risk.

    I wish you and your family all the luck in the world.

    ------------------------------
    Warren
    TucsonAZ
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  • 5.  RE: Looking for answers: Mitral valve replacement: Animal v. Mechanical

    Posted 02-24-2018 08:09
    Christina,

    My daughter had a St. Jude mechanical mitral valve placed when she was 3 weeks old. She outgrew it and had it replaced last year at age 13. They did not expect that it would last as long as it did but she stayed pretty small and the valve was able to handle her size for many more years than they expected. (The surgeon told us to expect replacement in 4-6 years; she made it to 13.) She was able to receive an adult-sized valve at replacement so she will not outgrow this one. This new valve is expected to last a long time, and with advances in technology I am not worried about the next replacement being an OHS just as you said.

    Before her mitral replacement the first time, I did not have time to research options or form an opinion about what may be best, so I cannot speak to one being the best option for you. I do recall the team telling me a tissue mitral valve was not an option for her at that time.

    We do also have experience with tissue valves. She had her pulmonary valve replaced at 9 days with a cadaver (not porcine or bovine; it was human) valve. That one needed to be replaced at age 6 1/2 because it calcified and narrowed significantly. She needs it replaced again this summer but they should be able to do it transcatheter because it is the pulmonary.

    She has been on coumadin her whole life. Our experience with it has not been too difficult. It can be a bear to regulate but I have learned to adjust the dose and keep her pretty stable. We check her blood at home with a monitor similar to a diabetes glucose monitor. She is not able to play contact sports and we have to be careful if she gets hurt. But she dances competitively and leads a fairly normal life, within the confines of what her CHDs allow.

    I'd be happy to talk with you more about it. Feel free to email me at mscarcelli@comcast.net.

    Good luck with the decision and the surgery!

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    Melissa
    North Wales PA
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  • 6.  RE: Looking for answers: Mitral valve replacement: Animal v. Mechanical

    Posted 02-24-2018 09:54
    You are right in the Mitral Valve will have to replaced between 10-12 years. They do not grow with your child so they would have to replace it with a bigger one. Also it could be replaced before cause the valve can fail. 
    My son was not luck to do any other valve because he was so small that they would not do different kind of valve. He has been on blood thinner for almost 6 years now. My son also has two clotting disorders against him. He was only taking blood thinner, I think all the doctors like this idea, over the other ones. 
    Good luck if you have any questions I will be happy to answer them if I can. 
    We were told at least three more valve replacements for him.

    Kristi Gray

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    Kristi Gray
    Greenbriar AR
    (501) 730-3226
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  • 7.  RE: Looking for answers: Mitral valve replacement: Animal v. Mechanical

    Posted 02-25-2018 10:44
        I have a bovine aortic valve and a cadaver pulmonary valve.  I chose not to use mechanical for some of the reasons you mentioned.  While they will need to be replaced, I am told in the future more and more of these replacements can be done in a less invasive than open heart manner.  I am an almost 50yr old TOF.

    Take care,

    Robin Davis

    Merck Women's Healthcare
    216-905-1514. 

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