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umsami

Rheumatic Valve Disease (mitral and tricuspid valves)

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Anybody have any experience with this?  How were you treated? Did you need surgery?

So a few months ago, I had an abnormal EKG.  My PCP repeated it, still abnormal, and I as referred to a cardiologist.  The way things work...I saw him six weeks later, took another month to get an echocardiogram , etc. Well, the results are back from the echo and they say "rheumatic disorders of both mitral and tricuspid valves." That's a shocker. Yes, I had strep throat a bunch as a kid--but I was always treated. I had an endocrinologist notice a murmur 7-8 years ago--and I was sent for a stress test, which was fine.  

I'll know more on Friday when I follow-up with the cardiologist.  On a weird note, my STBX also had a mitral valve issue over the past year.  Now, I'm wondering if they're sure that it's from rheumatic fever or if I (or we) could have passed something on to the kids.  That actually is my biggest concern.  The rest, I'm sure I can deal with. 

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Mitral valve prolapse here. So far,  they just watch it. So sorry you're dealing with this. Hopefully,  someone with more knowledge than I will chime in.

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I also have MVP, although I don't know what caused it. Thankfully, it's a non-issue for me and has been since I was diagnosed about 20 years ago. A GP with keen hearing heard it and sent me for an echo, and then the cardiologist diagnosed it. I get flutters a few times a year, but other than that I don't even know it's an issue. I hope yours turns out to be very mild.

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My mom had a mitral valve prolapse due to scarlet fever when she was 7.  Her valve was replaced 22 years ago with an artificial valve.  My younger kids can hear it click when the room is quiet -lol!  They told her at the time that it would need to be replaced in 10-15 years but hers is still going fine.  She is on blood thinners for life.  I think they monitor her every six months or so.

She knew she had a murmur but didn't know anything about the valve until she woke up one morning with major problems.  She had the surgery the next day.

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On 11/10/2019 at 8:49 PM, umsami said:

Anybody have any experience with this?  How were you treated? Did you need surgery?

So a few months ago, I had an abnormal EKG.  My PCP repeated it, still abnormal, and I as referred to a cardiologist.  The way things work...I saw him six weeks later, took another month to get an echocardiogram , etc. Well, the results are back from the echo and they say "rheumatic disorders of both mitral and tricuspid valves." That's a shocker. Yes, I had strep throat a bunch as a kid--but I was always treated. I had an endocrinologist notice a murmur 7-8 years ago--and I was sent for a stress test, which was fine.  

I'll know more on Friday when I follow-up with the cardiologist.  On a weird note, my STBX also had a mitral valve issue over the past year.  Now, I'm wondering if they're sure that it's from rheumatic fever or if I (or we) could have passed something on to the kids.  That actually is my biggest concern.  The rest, I'm sure I can deal with. 

I think it's definitely worth asking about the bolded--I'd want to know how they determine it's related to rheumatic fever or not related to it and how reliable that determination is. There were heart issues missed in my extended family that should've been detected a long time ago with a good family history. Some cardiologists are not up on their genetics AT ALL. It doesn't hurt to get multiple opinions and to look for a cardiologist that is interested in genetics (and even get a second opinion).

So, I had a great-grandparent with rheumatic heart damage, and she ended up with a pace maker. A family friend has valve issues and has had surgery with no complications. She does get a-fib, which makes her really uncomfortable. I don't know if that is related or separate from the valve issue. One of her valve surgeries was open, but I think the other one was (or will be--not sure of the status) done via cardiac catheter.

If it turns out to be not rheumatic, one possible thing to consider is autoimmune stuff, such as antiphospholipid antibody syndrome (with or without lupus). It causes valve problems. 

 

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22 hours ago, kbutton said:

I think it's definitely worth asking about the bolded--I'd want to know how they determine it's related to rheumatic fever or not related to it and how reliable that determination is. There were heart issues missed in my extended family that should've been detected a long time ago with a good family history. Some cardiologists are not up on their genetics AT ALL. It doesn't hurt to get multiple opinions and to look for a cardiologist that is interested in genetics (and even get a second opinion).

So, I had a great-grandparent with rheumatic heart damage, and she ended up with a pace maker. A family friend has valve issues and has had surgery with no complications. She does get a-fib, which makes her really uncomfortable. I don't know if that is related or separate from the valve issue. One of her valve surgeries was open, but I think the other one was (or will be--not sure of the status) done via cardiac catheter.

If it turns out to be not rheumatic, one possible thing to consider is autoimmune stuff, such as antiphospholipid antibody syndrome (with or without lupus). It causes valve problems. 

 

Hmm...that's interesting because one of my kids just came back with an high ANA test. 

So, I picked up a copy of the full report and images to send to a family friend whose an interventional cardiologist.  It says I have both mitral and tricuspid valve regurgitation...and from the measurements, may also have pulmonary hypertension.

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Antiphospholipid stuff is sort of an emerging thing in the literature--it's been known in lupus, but it's being recognized for its effects as a disease on its own. I have one identified family member with it, one presumed to have it based on the other family member having it, and then about five generations of symptoms consistent with it that aren't necessarily only heart related. It's associated primarily with strokes and miscarriages in women, but if you google the rare complications people in my family have experienced in past generations (bowel ruptures, for starters) and some of the less rare but still unusual things (leg ulcers), you can come up with ties to APS that are just now being understood. It's inheritance pattern is not known--they think it's a gene plus some kind of event that has to trigger the expression.

Cardiologists might not look for APS because it's probably considered a blood clotting disorder, something that affects pregnancy, or a lupus add-on, so if you go this route, you might need to arm yourself with some information. If so, feel free to private message me down the road. 

APS can be implicated in up to 20% of all blood clots according to some of the literature, but the lesser known effects are quite serious in some cases. Other people have elevated blood tests and never have a serious event. It's just weird, and more research will hopefully clarify/stratify risk profiles.

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I have both Anto phospholipid antibodies ( most likely non detectable anymore since I am on even more immunosuppressants than when I was last tested, but my third pregnancy was high risk due to those antibodies.   

I am know diagnosed with lupus but wasn't during that third pregnancy.

Two of my three children have supposedly benign heart conditions happening.  My son started getting tested for heart murmurs when he was 3 and yes, he had all infections evaluated and treated, and he had so many. -- he finally got his tonsils outcast 6 because he had non stop strep infections.  It takes monumental efforts to get him to a doctor now so he hasn't been checked for over 10 years. But yes, he has autoimmune going on too.

My older daughter has both benign tachycardia and benign mitral valve too.  (Supposedly benign)   Plus other autoimmune atuff.

So far no heart diagnosis for me but I am always waiting for that shoe to drop too.

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Interesting about the blood clots...I already know I have Prothrombin II gene mutation.

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My father had a mitral valve replacement in his late 60's.  He seems to have recovered well.  He claims he never had rheumatic fever but really who knows - it can seem minor.  I hope it is not genetic although there was some talk that it could be.

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