First post other than one reply(which im not sure got through or not) hahahaha!!

[Barb]

Hello Everyone. I am very new here to the forum. (2 weeks) i was diagnosed with a BAV through an achocardiogram and then Tuesday i had a TEE done. The results showed that there is only mild to moderate leakage and no thickening, so my cardio Dr. wants to just monitor it about every 6 or so months......He told me to go on with life as it was before finding out about my condition, and to think of myself as one of those ppl that will not have to reiceve surgery, as he reassured me there are ppl that dont need it. So for now i will keep my fingers crossed.
Anyways, i just wanted to post and introduce myself to all of you, i may and may not be posting alot, but when i get a few minutes outside of motherhood and work(as a lot of u do)i do enjoy and appreciate all the info and i can truly see how this site could improve alot of people's well being........and how the bonds between a lot of you that have developed friendships, are secure........
Take care all and Good luck and best wishes to all who have heart conditions and to all friends and family as well........

Great site!!!
Barb

 

[geebee]

Welcome Barb,

I sure will pray that you stay in the "don't need surgery" group. Many people never need surgery but I am not sure how or why that happens with BAV since I am a mitral patient.

This is the best place for support and questions. I hope you stick around.

 

[Barb]

Thanks Gina. Yes i can tell that this is a very helpful place to come to. Everybody really seems to care about one another. The quick welcome response was very much appreciated
Thanks again.

Take care
Barb

 

[hpuehler]

Be aware!

Be aware!

Barb,
Welcome to the site, I just had my aortic valve replaced due to a BAV. They told me when they found the regurgitation 14 years ago that they would monitor every two years and that it would probably never change. Needless to say, I believed them. This year I got the surprise. I am not trying to frighten you but make you aware that the status of the valve can change over time. They did not know that mine was BAV until they got inside.I see that you mentioned maternity leave in your profile. Did you just have a baby? Congratulations!
I see that we are the same age, YOUNG!
Stick around, everyone hear is so supportive!~!!!

Heather

 

[Barb]

Thanks Heather. Yes i am aware that my condition could change drastically. For now though i intend to live life to the fullest and try to put this to the back burner shall we say until, each of my checkups.
I have 3 children the youngest being 19 months.
Thanks again for the awareness reminder.
Take care.

 

[gadgetman]

Barb,

Welcome aboard!!!! The dues are cheap in this CLUB but the initiation is a BUMMER!!!!

Hopefully, you will become the longest serving member of our "waiting room".

May God Bless,

Danny

 

[Ross]

Oh Danny boy, once again, what am I to do with you?

 

[gadgetman]

At least I didn't start off with a bikini request!!!!!

May God Bless,

Danny

 

[BDMc]

Welcome to our Family!

Welcome to our Family!

Barb, Thanks for introducing yourself! May you not need surgery for a long time! Brian

 

[fyrfytr]

Hey Barb,
WELCOME! I told you this was a Great Place!
I am glad to hear your TEE has good news and I hope you can go a long time without having surgery. Enjoy the waiting room, it is your turn to pick up.
Take Care

 

[Barb]

Awesome!

Awesome!

You guys are so funny and awesome..........Love it.!. I will definately stay on with you all, like you said........it is a great place to be........Will be in touch.
Take care
Barb

 

[Marguerite53]

Welcome! This is a great place and I'm glad you've found us! Please try to ignore those 2 looney tunes guys, always crashing everyone's party . We do love them, tho!!

Please take your doctor's words to heart. Enjoy your life and do not worry!! I found out about my condition just before I was married. I was given warning signs to watch out for (shortness of breath, chest pressure as in an elephant walking across your chest) and strict instructions to be sure that I was medicated before all dental and invasive procedures (to ward off bacterial endocarditis which is a very serious potential infection for BAVers). I followed them to a T, had 3 healthy children, energy to raise them. I too, was told that I could easily go through life with no need for surgery. And for 25 years, they were right!! But the aortic stenosis became more aggressive in the last 2 years. At age 52, it's abit sooner than I would have hoped, but so it goes. I'm grateful to have had the excellent care and knowledge. I'll be having surgery sometime in April.

So!! Be vigilant with your dental care and be sure to use antibiotics before visits to the dentist or any type of surgery (if you're not sure, ask!!) Have your echoes at whatever schedule your doctor recommends. I wish I would have gotten copies of my echo reports over the years. I had stenosis for 10 years and was never told. Not that it mattered as I was in normal range, but how long was I at the low end of normal, I wonder. Maybe I would have chosen a life rhythm that was more healthy. Probably wouldn't have made any difference, but I would suggest that you get a copy of each echo, out of personal interest, at least.

We parents are lately trying to drum up information about our children's potential to have this problem. You might want to alert your pediatrician that you have BAV so that they will choose to listen more carefully for murmurs at each subsequent visit. This is NOT MEANT TO ALARM YOU!!! Just a "head's up" so to speak. There is not yet any consensus among the medical community as to what the likelihood is for passing it on. Just use the information to be aware.

Feel free to ask questions and join in, in any way! Again, Welcome!!

Marguerite

 

[Barb]

Hi Marguerite. Thanks for the post. I am very happy that u had that many years before surgery. And i'm sure that you will be good to go for another many many years after surgery.
I have an appt. with my pediatrician on Monday, and i will encourage an extensive listen to the heart for murmurs, and ask for echo all the way around.
My intentions are to(as another member puts it) be well and well informed, and wish the same on to everyone.

 

[aussigal]

Welcome to our world Barb...

I am a mum who did manage to pass the BAV gene on a few times

BUT all 3 boys are well in-spite of it and at the present are on no medications although they tire more easily than your average kid, it hasnt stopped them at all.

I had no knowledge of my BAV until about 5 years ago and now at 41 it is getting close to fixing-time because I also developed an aneurysm.

The waiting-room here is very popular with folks

I have learnt so much about this condition I can practically talk on the same level as my cardio about my options .

I also had all 3 boys echoed once my annie was discovered because until then I also had what was termed "benign BAV" ( one that probably wouldnt need surgery)...but now well, we definately have the inherited form of this .

So far though I am the only one who needs it fixed, the kids are fine, but I wasnt going to stop nagging my Doctor until I had seen their scans for myself and also took them to our local Paediatric Cardio for a consult as well.

Good luck in your quest to become the record-holding resident in the waiting-room ...One of the keys to good BAV care is very good Blood pressure management...you may notice many of us on a couple of different BP meds at the same time...I take a Beta-blocker and an Ace Ihibitor, others also take diuretics as well...all these help keep our delicate aortas from being pounded by the pressures of blood/life and has been shown to help slow-down the progression, and keep you in the waiting room longer ...

I also wish you well on getting the kids scanned. they should let you sit in there and watch, and ask the tech. to explain as its done what you are looking at...the techs that did our scans were marvellous.

We are now the resident "famous-family" up at our local doctors ...and when they have a student doctor there I always get asked to go see them too and show them my specialness .

 

[hensylee]

Hey, Barb - another one here to say WELCOME! Glad to have you on board. Those silly boys! They lighten the place every day.

 

[Barb]

Thanks ladies........I took my boys the the pediatrician yesterday. He took a really long listen to both and didnt detect a murmur. He is still sending them to a pediatric cardiologist.......Thank goodness.....I didnt have to fight him on it.
How did u know u had and anneurism? Does this condition also cause blod clots do u know?
Can u list all the symptoms (u can think of) that can occur?
This really is a great support group. It helps when there are other mom's with the same worries.......

 

[Mary]

Barb,
Do a Search on Forum topics and you can find the information you want. There are too many posts on the subject to try and give you a brief rundown.
Consider it "reading material" during your time in the waiting room.