what has your congenital bicuspid aortic valve done for you?

Well, first it had to hide what it was doing as other things. I mean, I was a preemie I was a red-faced fussy baby and I got sick a lot with tonsillitis or strep throat - I'm really not sure. I hardly ever had to stay home from school or work, and when I did, I ran a fever below 98.6, even though I was bright red as if I was burning with fever. I would get all congested and have a bad headache but the doctor, if I went could never pinpoint the illness.

As an adult I got a lot of diagnoses of bronchitis, pneumonitis and finally pneumonia. So I was two months shy of 50 when I finally was told that no, it was not menopause, no it was not adult onset asthma, it was dilated cardiomyopathy. It took longer to find out that I have a bicuspid aortic valve that I was born with - that I did not somehow make my aortic valve bicuspid with bad lifestyle choices, or just give myself congestive heart failure with self-abusive habits!
Is this a pity party? No, this is a reminder - listen to your heart, listen to God, stay connected with people who respect you, keep in touch with medical and health personnel, and keep moving!

My bicuspid aortic valve that I was born with is probably responsible for a great deal, When I paint a line, there is a little bump in it that reflects the irregular beat of my heart. My fingernails, although beautiful, are all unbalanced, and each of my nails has topography! My teeth are beautiful but plagued by illness, and I frequently turn bright red for no reason - for awhile I was gray, which was unsettling, I admit. But every time I think about my heart or read or study about the heart, I am amazed at this wonderful brain-muscle-machine that is a heart! And I am always again amazed that whether a valve has two or three leaflets on the opening can change a life so much.

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Welcome to the club. I was also born with BAV, but only diagnosed four years ago after my brother had his AVR. Before that, every time I had accelerated heart rate, spiking blood pressure, and/ or SOB, I was told it was a panic attack. My BAVD wasn't taken seriously until a little over a year ago when I found my current cardio. Had my AVR almost exactly a month later. Hallelujah!

Has your cardio talked to you about valve replacement surgery? If you are showing symptoms or have aortic stenosis, now is the time to be evaluated by a thoracic surgeon. If you wait too long, you could end up with pulmonary hypertension and/or heart failure, like me. My PH is gone with the old valve, but I still have heart failure, premature atrial contactions, premature ventrical contactions and ventricular ectopy. The PH and heart failure (caused by the thickening of the heart muscle as it struggles to pump blood through a too-small valve) might have been avoided.

There are other complications of BAVD that don't affect the valve itself. BAVD is a connective tissue disease and an indicator of weak aortic tissue and possibly weak tissue of the blood vessels in the neck and brain. It simply means you need to be scanned regularly for aneurisms and aortic dissections.

It sounds scary, but if we take care of ourselves and choose our cardios carefully, we can have full lives. Don't be afraid to shop around for a cardio that understands YOUR condition. They work for you, not the other way around. Your quality of life and your very life depends on you having a cardio who understands BAVD and takes it, and you, seriously.

Another important tip I learned: get copies of all your medical records and test results. Learn to read them, educate yourself because you may need to educate your doctors.

One last tip and I'll let you go, make a file with your meds and what they are for, your medical history, your family's medical history (parents, grandparents, siblings, etc.), contact list for your doctors and pharmacy. Print it out and carry it with you. Every doctor I've shared this file with has praised it. It saves both of you time and you can gather the info in your own time and not have to try to rack your brain about what so-and-so said Dad's Grandma had.

Take care,

Jonna

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All my adult life, my older sister, whenever hearing that I had bronchitis (again) or pneumonia (again) would make a comment that cut to my heart and she would say "what is it that you are doing that makes you sick all the time?" - like I WANTED to be sick. Not my fault that I had pneumonia 11 times between 2nd grade and age 52! Looking back now, I think it was all heart related. I always knew deep in my heart there was something wrong somewhere.

And for years all my docs thought I was a little crazy, I think. I always had a heart murmur - from rumatic fever when I was a baby, my mother told me. Who knows? I am just glad that someone finally figured it all out. Took a very long time to get here.

:-)

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I also suffered from multiple URI's, but I had the health problems associated with being born with only one kidney and it restricted. In our teens, my brother and I had spells where we were frequently very light headed. The doc, not a cardio, put us on salt tablets! Not exactly the best thing for someone with kidney issues. And he never checked our hearts. Hmmm, ya think that might have played a part?

Jonna

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Thank you both so much for the information and advice - I have been slowly arriving at similar conclusions as Blessed Granny. It is good to hear this from somebody with experience.

I'm sorry to say that I already have congestive heart failure and an icd. Yes, on my last visit my cardiologist told me that I will need to have at least my aortic valve repaired or replaced before I die, but I do not need the surgery at this point.

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Sweetie,

I played that game for three years after I was finally diagnosed. I even had my brother's cardio tell me, "Well, you're no where near as bad as your brother was." At the time I had trouble crossing a room because of SOB. My aortic valve was at 1.1cm then and 1.0 when it was replaced. Please, please ask for an evaluation by a thoracic surgeon. If your cardio won't approve it, go find another cardio. Cardio's in general do not understand BAVD. Don't let them put you on the waiting merry go round.

Jonna

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r4,

I was born with BAV as well......but it was diagnosed when I was 4 years old at my pre-school check up. When I was 13 years old I had the valve repaired and that kept me going strong and healthy until 2009 when I had to get the valve replaced.

After the surgery I developed alot of collateral issues with heart and lungs (cardiomyopathy, diastolic dysfunction, complete heart block, LBBB, COPD, ascending aortic aneurysm, and pulmonary hypertension) I got a pacemaker and that has taken great care of the rythm issues. I am seeing a pulmonologist and the heart failure, transplant and pulmonary hypertension clinic and of course the cardiologist.

With all this medical intervention now I have learned alot regarding what the BAV can cause that I was unaware of before. I had an umbilical hernia and have found thats one of the things BAV can cause more frequently than the general population.

I, too, suddenly turn bright red and my face is hot to the touch although I don't feel hot and run no fever....

All growing up I had tonsilitus ALL the time till they finally removed them at age 16. I also had frequent bouts with bronchitus and sinusitis every winter.

Best Wishes,

Jeanne

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r4-
My old cardiologist told me not to worry about my "leaky" valve. He told me I would need a replacement at around age 70. One of my nagging best friends kept telling me to get a second opinion. I saw that doc beginning of last December, went through countless tests, was sent to visit a surgeon on Jan 20th and was in surgery on Feb. 9, 2011. I thank God every single day for my friend who made me go get another opinion. If I had not, I would not be here today. The surgeon found my aneurysm remarkable as it had been rubbing against my sternum and I was a day or two away from dissection. A second opinion is a very good thing.

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Hi anniegee and everyone who has responded. I see that I need to start gathering my facts!

Thanks so much, r4

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You would think that by now with all the modern technology, there could be a way to detect this in newborns or even pre-birth. Probably would cost a million dollars for the scan. Someday it will happen.

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it probably can be detected! I was born in 1952, and there were as they are called "gross" signs but my parents did not follow up - they actually thought that I was probably prone to asthma like my dad! I have NOT had asthma, according to the allergist who insisted that I be seen by a cardiologist, when I was 49. I carried two children to term, but with the first delivery I started bleeding three days after delivery, and had to go back in for out-patient surgery where the obstetrician made some repairs. Then with my second pregnancy, I went into labor at 24 weeks - fortunately they got it stopped with ritadrine, then terbutaline at home for awhile. That baby was born a week late. Those were gross signs of which I did not know the meaning, but I have seen these same things in the on-line descriptions of other women patients with this.

Because I have always been very careful of myself to the point of appearing lazy, I never encountered the kind of sudden physical stress that sends some younger bicuspid aortic valve patients into cardiac arrest. Actually the first time I saw that I have a bicuspid aortic valve was on a report from a ct scan which was done in 2006, by which time I had been diagnosed for 4 years with cardiomyopathy and had had a defib implanted.

Yes, I DO hope that these descriptions will be a flag for someone - if I had been treated earlier, possibly I have avoided the early onset of CHF which I suffered from about the age of 45 on.

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