A Newbie

[knoxbone09]

Hi All,
I just wanted to take the opportunity to introduce myself: my name is Grant and I am a 22 year old recent college graduate diagnosed with BAV this past July. Since the diagnosis, I have had a lot of questions about my condition and have been surfing the web looking for answers to supplement the information the cardiologists have given me, coming upon valvereplacement.com only by chance.
After browsing ValveReplacement, I was pleasantly surprised by the community and the resources available here; this is just the outlet that I was searching for! I hope to have the opportunity to meet all of you and become a contributing member of your community in the near future.

Best,
Grant

 

[Mary]

Hi All,
I just wanted to take the opportunity to introduce myself: my name is Grant and I am a 22 year old recent college graduate diagnosed with BAV this past July. Since the diagnosis, I have had a lot of questions about my condition and have been surfing the web looking for answers to supplement the information the cardiologists have given me, coming upon valvereplacement.com only by chance.
After browsing ValveReplacement, I was pleasantly surprised by the community and the resources available here; this is just the outlet that I was searching for! I hope to have the opportunity to meet all of you and become a contributing member of your community in the near future.

Best,
Grant

Hi Grant!
I had a BAV before replacement, and our 23 year old son has a BAV. Oops, I almost forgot, our 8 month old grandson has a BAV too! Needless to say, I've spent a fair amount of time reading and trying to stay current with the medical literature on BAVD.
Were you having any symptoms that led to the diagnosis or did they discover it during a routine physical? I was unaware that I had one until I was 49 when my pcp heard the murmur. I developed aortic stenosis and had it replaced four years later. Both our son and grandson are being monitored but no stenosis or regurgitation is present at this time.
I'm glad you found us, but wish it had been under different circumstances. Make yourself at home and ask any quesions that you may have.

 

[netmiff]

Hi Grant, and welcome ! This is a great place to get answers to the many questions you will have.

I was diagnosed in 1985 with a very slight heart murmur. Fast forward to about 1995, and after a bout of what I thought was bronchitis, I ended up in emergency. Well, the doc there said he heard my murmur as he walked into my room! Before I left that night, I had had several sets of blood work, a chest x-ray, an EKG and an appointment made for an echocardiogram withing 36 hours. I also overheard him talking to my family doc by telephone around 8pm, telling him I needed a cardio ASAP. From then, I was followed annually with an echo and a visit with the cardio, until about 2 years ago, when the cardio said the time is NOW. Surgery was September 2007, I chose a mechanical valve, and am now living my life as if it never really happened. Didn't know it until the surgeon was in there, but my valve was a BAV, too. Anti-coagulation is a minimal thing in my life now that I have the hang of it.

So, pull up a chair, and post any questions you have. We've all been there, so nothing is too wierd or stupid or embarrassing!

 

[Karlynn]

Hi Grant - Welcome! Glad you found us.

 

[knoxbone09]

Mary, it's quite a long story!
I sustained a concussion after hitting my head on the corner of a hallway during a fall in May; I shrugged the injury off until mid July when I still had concussion symptoms: short term memory problems, difficulty concentrating, cognitive deficits, and headaches. I had a CT scan done and they discovered calcifications in my distal carotid artery due to early onset atherosclerosis (familial high cholesterol). They then examined my heart and discovered I had mild aortic regurgitation due to a congential defect--I have three leaflets, but two of them are fused together and thickened, it was so difficult to view that my cardiologist conferenced with the entire cardiology department at Loyola.I've been having slight chest pains, attributed to anxiety by my cardiologist, but was asymptomatic before the diagnosis. As far as the head injury, I was finally diagnosed with Post-Concussion Syndrome, which has made it all the much worse--initially--comprehending a future surgery!
Mary: Since you have considerable experience with BAV, have you heard of anything similar to my particular condition, where the valve is a "cross" between a normal valve and BAV?

Thanks,
Grant

 

[DebbyA]

Welcome Grant!
It's hard to tell from your post, but you may have 40 or so years of watchful waiting--finding out so early is a mixed blessing unless you need surgery soon...

 

[knoxbone09]

Debby,
I certainly hope so! I mistyped, the regurgitation is actually moderate. The doctors have all told me "probably" not within the next 10 years, and my cardiologist has told me 10-15 years likely--maybe more. Only time will tell, though.

 

[skeptic49]

Welcome Grant! Another proud BAV owner joins the fray! Glad to have you aboard.

Best wishes,

Jim

 

[ALCapshaw2]

Welcome Aboard Grant !

I know I've read about leaflets being fused together before but don't recall which members had that condition, but yes, it's not common, but not unheard of either.

The Most Important thing for you to remember is to have your regular checkups (and call your Cardio if you develop 'symptoms').

The Good News is that Valve Replacement Surgery is a Highly Refined Art with extraordinarily high Success Rates, especially in First Time Patients under age 60 when performed by experienced surgeons (i.e. surgeons who do a lot of Valve Replacements - the top guys do 200/year). You might want to avoid surgeons who only do a few a year and concentrate on ByPass Surgery 99% of the time (typically Local Hospitals).

'AL Capshaw'

 

[COLLEEN S]

Welcome Grant! You will find lots of good stories and good people here. I am a BVD'r. Had it replaced ONE YEAR AGO TODAY!!! Ross OHS before that and also aneurysm repair. There are young and old on the forum.

 

[hensylee]

welcome, Grant. What a handsome name; you must be very proud of it.

Glad you found VR. It has been around for quite a few years now (about '98, I think) and lots of information is within its boundaries. If you don't find your answer to any question, somebody here has it.

And yes, we hope/kinda expect you to stick around to contribute.

Blessins..........

 

[epstns]

Hi Grant, and welcome to The Waiting Room -- the virtual room where many of us await our own turns at valve surgery. I'm in a similar "holding pattern" but I'm much older than you (61 now). I have a "prpbable" bicuspid aortic valve, but they can't visualize it clearly enough to be sure. Mine was diagnosed when I was in my mid-50's and a doc heard a murmur. Prior to that, didn't know or feel anything about it. The main difference for me is that I have aortic stenosis (the valve doesn't open fully) rather than regurgitation (where bolld can flow backward through the valve when it is closed). I have lead an active life, including 7 years in the National Guard, work 50-60 hours a week in a high stress job, and I still jog about 4 miles a day (although slower than before!).

All we can do at the moment (this includes you, in your current situation) is to keep a careful watch on the valve. Have your regularly scheduled cardio visits, listen to the cardio and ask lots of questions. At this point neither of us knows when surgery will be required, but we must get used to the fact that surgery WILL be needed at some future time. Once we've accepted that fact (as I have and I hope you will eventually) we can just get on with life. Life is too short to spend it worrying about things we cannot change. All we can do is make the most of what we have.

Again, welcome. Ask all the questions you can think of. The folks here are the best at sharing real life experiences about this scary ride we're on.

 

[knoxbone09]

All we can do at the moment (this includes you, in your current situation) is to keep a careful watch on the valve. Have your regularly scheduled cardio visits, listen to the cardio and ask lots of questions. At this point neither of us knows when surgery will be required, but we must get used to the fact that surgery WILL be needed at some future time. Once we've accepted that fact (as I have and I hope you will eventually) we can just get on with life. Life is too short to spend it worrying about things we cannot change. All we can do is make the most of what we have.

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.

 

[njean]

Just wanted to welcome you to the forum Grant ..... glad that you us!

I also hope that you do not have to undergo surgery for a long time still but if & when you do, we'll be here to help you thru it!

Stay well!

 

[Cooker]

Hi Grant ... welcome to the zoo

 

[MarkU]

Welcome Grant!
It's hard to tell from your post, but you may have 40 or so years of watchful waiting--finding out so early is a mixed blessing unless you need surgery soon...

My doctor first noticed my murmur in 1958 when I was five years old, but I didn't end up having surgery until age 47 in December 2000. I was asymptomatic until until about eight months prior to my surgery. Up until that time I led a very active, unrestricted lifetyle.

It took me close to a year to fully recover from my surgery. My cardiologist encouraged me to get more aerobic exercise which led me to start doing triathlons three years post op at age 50. I did my first half marathon this past February at age 55 (see my avatar - I did the race with my 25 year-old son).

I've probably been luckier than most, but having a valve replaced and being on Coumadin has not made a significant impact on my lifestyle. In fact, I think it has made me more aware of my health and prompted me to take better care of myself than I would have otherwise.

Mark

 

[Eva]

Welcome aboard, Grant, and I hope you will find comfort and answers to your questions.

 

[Kathy McCain]

Hi Grant!

We have not been formally introduced, but we have posted back and forth. Welcome to the forum! Great group of people! You came to the right place!

I too, had a BAV. Was not officially diagnosed, until a year before the surgery. (with aortic stenosis) I was aware of a heart murmur, that was found at 23yrs! At that time, the Dr. told me I had a very small murmur. Nothing much was ever made of it, until 4 yrs before the surgery. I was 56 when I finally had a tissue valve implanted! So you see, it might be quiet awhile before you actually need the surgery. I'm doing great, though. Just happy to be here!

You seem to be dealing with the diagnosis quiet well! You also seem like a very thoughtful, mature, and intelligent young man. It definitely comes through in your posts! I believe you will do just fine.

Good luck, and keep us updated!

 

[knoxbone09]

Hi Grant!

We have not been formally introduced, but we have posted back and forth. Welcome to the forum! Great group of people! You came to the right place!

I too, had a BAV. Was not officially diagnosed, until a year before the surgery. (with aortic stenosis) I was aware of a heart murmur, that was found at 23yrs! At that time, the Dr. told me I had a very small murmur. Nothing much was ever made of it, until 4 yrs before the surgery. I was 56 when I finally had a tissue valve implanted! So you see, it might be quiet awhile before you actually need the surgery. I'm doing great, though. Just happy to be here!

You seem to be dealing with the diagnosis quiet well! You also seem like a very thoughtful, mature, and intelligent young man. It definitely comes through in your posts! I believe you will do just fine.

Good luck, and keep us updated!

Thank you Kathy!

Thank you so much for the compliments.

I'm hoping it will be awhile, only time will tell. As far as the diagnosis; despite the unforutnate cirsumstances, I think that it has fostered some positive developments in my character as far as thinking about the "bigger picture."

 

[Matski]

Welcome Grant,

Definately a wealth of knowledge here. In regards to your anxiety induced chest pain, welcome to the club . I still joke with my Cardiologist "ignorance is bliss"; I had no symptoms until he disclosed my situation as well. Once you get comforatble with it things get back to normal. Honestly nothing to really to freak out about just need to keep an eye on it.

Dont be too worried about the regurg being moderate...mines been moderate since 97, upgraded to moderate-severe in 06. I'm still asymptomatic and having echo's on 6 month intervals.

Matt