Hey, I am 28 years old and have always known about my mitral valve prolapse (my dad heard my murmur when I was a baby). I have had echo's ever since I can remember and they have been really consistent up till now. The concern was a recent stress echocardiogram where my EF was reported at 53-55 and had been above 60 one year before on the same stress test. I have a degenerative disease called Barlow's Syndrome which produces extra (billowing) tissue on the leaflets of my mitral valve. Surgery is now recommended at earlier stages in the development of this condition as surgical practices get better and to ensure good LV function for the long term. I understand that there are serious risks in waiting to have surgery (lower EF, dilated LV), but there are also risks in having surgery. I don't want to get surgery unless it is absolutely necessary, especially because I am asymptomatic, and it is sometimes a mistake for me to believe everything I'm told from doctors as different doctors say different things about my condition and the timing of surgery.
Has anyone had a mitral valve operation that would be willing to chat about it? Or advice?
-Pixie-H
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Mitral Valve Repair Soon!
- By Pixie-H
- Posted April 7, 2008 at 1:12 am · 9 replies
- In Younger women with heart disease
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Childbirth Surgery Heart attack Bypass surgery Coumadin Diabetes Stress
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- By Rudywg
- Posted April 7, 2008 at 8:30 am
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First, let me say I'm sorry to hear about your struggles. You sound like a very intelligent, in-charge woman and that's really in your favor, but it still stinks that you have to face these issues.
While I do not know anything about your condition, I've responded to your post because I have both mitral and aortic mechanical valves. My journey started when I was 25. I knew I had a congenital defect but docs wanted to wait to do any repairs, mostly so science could advance. The day before my 26th birthday docs patched an ASD (hole between the top 2 chambers) and repaired my mitral valve. This was way back in '78. The tear in the mitral valve was clean so docs were able to repair it rather than replace it with a pig valve.
Then in '99 I went into cardiac failure and had my two valves replaced. I was 47.
Please feel free to ask away with any questions you may have about my surgery and living with mechanical valves.
As you know, you have lots of issues to consider and it's vital you have a team of people surrounding you and supporting you. It's sounds like you're well on your way to that. If I can add to that support, I'd love to. My life is certainly more complicated with mechanical valves, but I have learned that we can grow better and stronger if we choose to embrace the things in life that we can't change. I'm a professional humorist which also helps!
Best, Rudywg
- By alvera1
- Posted April 8, 2008 at 5:45 am
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Hi, I had a mitral valve repair when I was 48, as the result of damage from a heart attack. I didn't want to take Coumadin for the rest of my life, which is why I chose the repair. I don't know how far away you live from Cleveland Clinic, but I traveled there from PA to have mine done. It wasn't very bad. I had Delos Cosgrove do the surgery and the ring in my heart, he created. Open heart surgery is never really a breeze, but I did very well and would recommend the repair to anyone having problems. It's been 7 years and I have never had a problem. I had to have bypass surgery a year later in Pittsburgh and that wasn't so bad either. If you have any specific questions, please let me know. I'm happy to share my thoughts and experiences with you. You are so young. I don't know about childbirth if you are on Coumadin. You don't want to have a low ejection fraction as that makes life pretty tough. I had a 30 before my surgery and I was exhausted all the time. I hate it. It is now 55 and I do pretty well.
Alvera
- By poetindisstress
- Posted April 8, 2008 at 9:44 am
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Oh it well I shouldn't say nice but I am 26 an at the age of 25 I had mitral valve repair done. Please feel free to shoot me an email an I will be willing to talk.
Abigail
- By Pixie-H
- Posted April 10, 2008 at 1:42 am
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You are all very helpful, how nice it is to have a community that is willing to share experience and knowledge. I have had mixed responses from surgeons... I've seen several and had about half say operate now, before the presence of symptoms and the other half said to wait, you have time. This has made my decision making process very difficult, but I am thinking that if surgery is eminent, I may as well get it over with. Does anyone know if it is common to have an ejection fraction improve after surgery? I was led to believe if you go into surgery with a low EF, you come out with a low EF? This is great news, that a person's heart can change so positively after surgical intervention!
- By RobinMichelle
- Posted April 12, 2008 at 6:41 pm
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Hi
I am 35 and have congenital heart diease.
I am so sorry that you have to go through this and make this decision at such a ypung age. Dont you wish someone would just tell you what to do.
My second open heart surgery was a Mital Value repair, I also knew it was coming but I was so symyomatic that I did it as soon as they told me.
I also didnt want it to get worse and cause more damage. My thought was to do it, get it over with and not worry about doing it.
Good Luck and please let us know.
Robin
- By 2catty
- Posted September 16, 2009 at 12:09 am
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I am worrying that that is what I am fixing to have to do my self. I am 37 and have mitral valve prolapse and EF of 40. I already did the cardiolite stress test and now waiting on results. Hoping for the best and preparing for surgery if I need it. So scary.
- By Pixie-H
- Posted September 16, 2009 at 12:31 am
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Hi 2katty,
I am now almost exactly a year post-op and I can say for sure that after all the stress and wondering about some hectic decisions regarding my health, surgery was worth it. No more leakage for my mitral valve. However, doing so (for me) took a real trust in the surgeon. I mean, you are trusting this person with your life... sacred life. Also, ask many questions and try to get a mitral valve repair... do the research, for someone young, a repair is preferable. My surgeon was dr. David Adams in NY city, check out the website mitralvalverepair.org. He was the first surgeon to say my valve was something he sees and operates on often, what a relief. I am willing to give you the information I have learned if you are interested, please let me know and best wishes. I can sympathize with the flood of emotions you must be going through.
- By Anne61
- Posted September 16, 2009 at 11:31 am
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Hi Pixie, I too had mitral valve prolapse. Mine was diagnosed in my mid twenties. It wasn't until I hit 60 that it became an issue. At first the cardiologist said I could wait 2 years before it HAD to be done but he wanted to do another test just to be sure. That was a TEE (transesophageal echo). That brought the time frame down to 6 months. I didn't want to wait until it HAD to be done so in I went. I now have a bioprosthetic valve - my mitral valve was too distorted to save. It's been 2 years and life is better than before. Keep doing research but find a cardio. that you are comfortable with because they will be a part of your life for a long long time. And feel free to email me with any questions.
- By 2catty
- Posted September 16, 2009 at 1:05 pm
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Thank you Pixie, any info you can give me would be greatly appreciated. I wonder why when you first get diagnoses with mitral they say it is no big deal? Not their chest huh? On top of it I have the low ejection fraction and diabetes that makes it a complication. I am so glad your surgery turned out to be a good thing. Right now I have a hard time doing anything because I get out of breath. I feel like I am lazy or something, because I am use to mountain biking. Thanks again.
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