A Newbie

[TXWildflower]

Hi Grant this being our first formal introduction. I apparently was born with a defect, still not sure if bi-cuspid or not even after heart cath. First heard murmur at 45 now 10 years later the time is getting close. I was moderate though for the whole 10 years and then boom! All heck broke loose it seemed. the valve area had changed dramatically and other tests ordered and some new meds and now I am waiting around again trying to lose weight. Except now I am grounded - only from leaving the country- had to cancel a trip to the Caribbean I'd planned on, but ya know - I'm alive and where I need to be now. I have few symptoms that I notice, just some shortness of breath and fatigue. I am supposed to keep my bpm around 100 and they put me an a statin(beta blockerI) which has made that easier. I can actually exercise if I don't overdo. So welcome to the waiting room

Although I was quite a bit older than you when they discovred mine, I do remember the fear and shock and uncertainty of it clearly. You realize your own mortality. As someone else said, eventually you get used to it and go about your business - just don't miss your check ups - not a single one - and follow Dr.'s orders and come here if you have questions, because there are people on here that can tell you just about anything you need to know.

My advice, live like you did before you knew about it becuase the odds are you've got a bit of a wait. However, if you notice any odd symptoms- call the cardio and let him know. It seems funny that it can be just doing nothing for so long and then out of the blue start deterioating fast. What I hope for you is that you get to wait long enough that you can do the latest/greatest procedure whatever that might be. Hopefully transcatheter replacements which are now in clinical trials and I think results are looking good from all I'm hearing. Here is a link to an ABC GMA segment video about it (short annoying advert first) I found this somehwere on here before so it may not be news to you. This was recorded early in Jan 09 I believe. http://abcnews.go.com/GMA/OnCall/story?id=6589797

Good luck and welcome again to the waiting room. I think I am ahead of you in line.... You better not jump ahead.

Rhena

 

[Jess]

Hi grant,

I had congenital aortic stenosis due to bicuspid valve.. I had the ross procedure 4 years ago (at age 17) now im 21. If you have to any replacement, i would recommend the ross procedure, its been great for me, you don't have to go on any coagulation medicine so can live a normal life. And so far there has been little to no deterioration in either valve. If you want more info, feel free to contact me

Jess

 

[COLLEEN S]

Hi Grant and welcome! You will find lots of good people here. I am BAV also. See my signature line.

 

[kpearse]

Hi Grant - Welcome!

 

[hensylee]

You're right on, Steve. I had graduated college a month before my diagnosis and just started living on my own away from any family and friends, so this was a bit difficult to wrap my head around at first; I had been giving a lot of thought to my future, and this wasn't part of it! However, I think I'm getting closer to complete acceptance of my condition, where I can go about my day without worrying or thinking unneccesarily about my heart and its future.
I was quick to accept the fact that I would need surgery--too quick! I moped around for a couple days, full of self-pity, thinking that I wouldn't make it to 50 or 60 with my luck (There are a lot of dangerous statistics out there.) Then I saw a headline in the Trib (noticed your a Chicago guy too!) about a kid a year or two older than me, a second year med student at Columbia U., who had just discovered he had an aggressive form of brain cancer. You might have seen the story, but you know what he did when he got this news? He cried for awhile with his mom, and then he contacted a doctor who was researching his type of cancer and offered his assitance; he now works with this doctor full time, fighting his battle in the lab as well as his head. When I read about him, I realized something very important: I have no right to mope about anything, I have a fixable problem and many years ahead of me while this kid has to fight for every day past 6 months. I may not have gotten the best hand in the deck, but my condition is nothing compared to what many others have to face, and it does me no good to dwell on something I can't change. It's been a difficult summer, but the most productive I've ever had philosophically, and now I don't take life for granted, realizing that this all is a gift that God has the right to rescind at any moment.

and so that young man you read about set your mark for you. One of these days you should maybe let him know. I think as you are with us and get to know the members, you will find that almost none of us takes our life today for granted, nor will you. Knowing the history since heart valve surgery of many of our members, the surgery has spurred them on to great(er) heights than they ever imagined.

That's just an extra included benefit with VR membership and sharing of information. We inspire each other.

 

[cbdheartman]

Grant welcome. I am a 31-year old who 4 weeks ago today had an aortic aneurysm repaired and my BAV spared. I am doing well, a little wiped out, but better each day.

I knew about my BAV since I was 3 years old though my surgeon Dr. Cameron thinks it was a fluke that this was discovered because even pre-surgery my murmur was so slight that trained ears could miss it. (My father-in-law and brother-in-law both doctors could not hear it in June!)

I hope you don't have an aneurysm develop, but make sure that you get a baseline echo and a cardiac MRI sometime soon to check your aorta for dilation (not everyone gets it, but it is good to be on top of this). I never knew that aortic aneurysms were a possible problem for someone with BAV until a few years ago as my aorta showed dilation. The reason I say cardiac MRI instead of a CT-Scan is that you are young and you do not want to overdo your radiation exposure.

Please feel free to contact me if you have any questions. I have been given much by those on this board and now as I am on the road to recovery, I feel as if I have much to give back to those who are in the shoes I was just in.

 

[terodac]

Welcome Grant, you will find a lot of information here we have all walked the walk or on the path to walk the walk. Again Welcome, no question is to small here, I have learned so much the main thing is you are not alone on this path.