Poll on causes of member's valve problems

[debster913]

It seems many of us have had congenital heart issues. Mine as well, and it's a long, complicated story that many find hard to believe.

When my mother was in labor with me, I had a heart attack at the site of my mitral valve. My heart stopped beating for enough time to cause minor brain damage (I have a weak right side as a result). I nearly died, and the first few days were touch and go. I spent the first night of my life with my pediatric cardiologist (he was the best cardiologist I ever had, and in some ways I wish he still were my doctor); and I spent 13 days in the NICU altogether. I was on all sorts of drugs my first year, so my initial development was slow.

Thankfully, almost 30 years later I'm doing as well as can be. I've lived longer than the doctors predicted (5 years max), and while valve replacement is certainly in my future, I have many years before I need to have my mitral valve replaced (I hope).

 

[char2mar]

Congenital Heart deffect. Bicuspid valve, AS, Dialated aortic root and ascending aorta.

Char

 

[Yaps]

congenital

congenital

My father had it as well, they gave him a porcine valve..lasted him 12 yrs.. He died siting straight on the couch.His mom died of it at age 44.....remember I checked our genealogy recently , my son has it..my daughter has wpws... no real strong hearts here..

 

[BionicBob]

Combination

Combination

Good poll, Betty (from the land of the National Basketball Champion Tarheels!).

I answered "congenital" because I was told from the time of my 20's that I had aortic regurgitation and would probably need a valve replacement later in life. (Had the surgery recently at 63.)

However, in recent years aortic stenosis/enlargement of the heart became an even bigger concern, and my cardio once remarked, "forget what you were told about it being a congenital problem." He didn't explain that very well. I am not 100 percent certain this was a natural consequence of a leaky valve or if other causes like calcification were involved. But congenital seems a reasonable answer. (Aren't all polls just a rough estimate or a snapshot anyway?)

Again, thanks for a thought-provoking exercise, Betty.

 

[Ross]

I didn't vote.

My PRIMARY suspect is Radiation Damage from treatment for 'probable' Hodgkin's Disease.

Reumatic Fever possiblity? Unknown.

'AL Capshaw'

Option added and one vote cast for you under Radiation Treatment.

 

[Les]

Endocarditis...of unknown origin.

 

[Jean]

I voted for "other" as my bi-cuspid aortic valve was congenital, but not really disease. Didn't know just what to check. Murmur detected in mid 30's; no real problems until mid 50s.

 

[Gemma]

We were told Jim's was a congenital bucuspid aortic valve (although the surgeon described it to us as 2 leaflets partially fused together with the third too small to fill the gap, it was still described as bicuspid in his report to the cardio) but like Phyllis, I've always been slightly suspicious of all the cases of tonsilitis (same as strep throat???) he had - leading to his tonsils being removed a couple of years before his valve replacement. Apparently no murmur was detected at that surgery though ...hmm... mind you, if it was caused by infection that would have been found during the replacement surgery, you'd think...
Whatever, I picked congenital!

 

[Wise]

Yes, Wise. It is congenital, as are our two four-leaf clovers. I thought, perhaps wrongly, that some would not realize it. I'll shut up now, as I am apparently muddying the waters instead of clearing them...

Apologies,

Hi, Bob. Thanks for your answer. My question was totally sincere and not a response to your "supposed" muddying the water. I really appreciate your knowledge (and your wit) and would never feel that way. I'm such a novice at this and sometimes question myself. Thanks again.

 

[catwoman]

I wasn't sure how to answer so I chose Other (please comment). I was diagnosed as having MVP in 1990, but my surgeon found an atrial septal defect. From what I've read, an ASD can cause MVP. At least one doctor told me as a child or teen-ager that I had a murmur.

 

[MomOfThree]

Hi! It's so interesting. Mine, congenital - unicuspid. Any other unicuspids out there?
Martha

 

[PJmomrunner]

I chose "congenital" because I have a bicuspid aortic valve, but I also have an ascending aortic aneurysm and labile hypertension, so I have Bicuspid Aortic Valve Disease, which I believe is a tissue disorder.

 

[Rebecca Havel]

Hey Betty,

I voted Rheumatic fever that and not taking care of myself lead to having my aortic valve replaced.

 

[Barry]

Given that my heart murmer wasn't spotted until I was 35, and was told that it was congenital, I wonder how much when a doc says that it's congenital that what he/she is really saying is that there's no other apparant cause so I guess you must have been born with it - i.e. when the problem isn't caught until you're an adult that "congenital" may really mean "unknown".

 

[Karlynn]

I said MVP - but my MVP is definately genetic. Mother, sister and son have/had it as well.

 

[weekycat]

Hi Betty!

Hi Betty!

I checked unknown, because after asking me if I'd ever had rheumatic fever, (no), or taken Phen-Fen, (no)...my cardiac surgeon said he really didn't know what caused it, but that we would just assume that it was congenital. He said I was probably predisposed to MVP...or something like that.

I did have a heart murmur as a child, or as my mother says, "Some of you kids had heart murmurs...I just can't remember which ones". There were 10 of us, so I guess I can't blame her.

Anyway, I had some blood drawn yesterday...and my PCP is finally going to do some tests for LUPUS. I have way to many symptoms not to, and it sure would explain a lot. So...I may have to change my answer to the SLE one.

The only thing is, if I do have Lupus and that's what caused the damage to my mitral valve...could it possibly affect my other valves down the road??

 

[Blanche]

When my husband was a young child, they think he had rheumatic fever which left him with a small heart murmur. But, it was endocarditis from dental work at age 56 which made the valve replacement necessary. The endocarditis was not diagnosed for almost three months. He had been medicated prior to the dental work, which might have contributed to the misdiagnosis. Back in those days, we were not good medical consumers and didn't even know what endocarditis was, much less the symptoms. We both relied on our doctors for everything. What a mistake. Although Albert had a heart murmur since childhood not one of the doctors he used ever told him to medicate before dental work.

Blanche

 

[CCRN]

I have always been curious as to the causes of our valve problems so I thought I would try doing a poll. I've not tried this before so please forgive me if I mess it up.

Please post what is presumed the origin of your valve disease.

Thanks,

Betty

Wow!

I no longer feel alone. Most of the estimated 1-2% bicuspid valve population must stop by this site. I placed myself under congenital heart disease since I was born with a malformed valve and it is predicted to give me trouble in the not too far future.

 

[Rich]

I voted for rheumatic fever which I did have during WW2, but also born with a bi-cuspid valve.
Murmur detected during high school football physical in the mid-fifties.
Was told not to worry about it so I didn't.
Forty two years later that advice almost killed me.

 

[bvdr]

What I am finding so fascinating about this is how many of us have more than one factor that we identify as possible contributors to our valve problems. For me it was rheumatic fever but also radiation treatments and then the pathology report on the explanted valve also stated that the tissue was myxomatatous (spelling?) as well.

Look at all the crossovers and combinations members have mentioned in their posts. What strong hearts we must actually possess to have come through these onslaughts! We are battle hardened warriors!