I too am new!

[kfredva1]

Hello Everyone! I have been lurking, reading the posts and taking great comfort from this forum. I am 40 years old and have BAV. Just to give you a run down, my story actually starts 17 years ago. My brother, very active, tall athletic man was cutting brush on his property when he fell to knees from acute chest pain. He managed to walk the 500 yards to my home and I was able to call an ambulance for him. He has experienced an aneurysm and after over a month in the hospital came home with a St. Judes valve. My brother was diagnosed with Marfan's syndrome. At that point, it was assumed it was a fluke occurance, no one had ever had this in the family. After extensive research.. several family members from my father's side of the family had passed away from aneurysms. My brother urged our family to be checked and it was at this time I was found to have BAV. I was told not to worry about it, that when i was an old lady it MIGHT have to be replaced. My brother lived another 6 years but passed away during surgery from more aneurysms. I didn't think another breath about my condition until this past year when very sick with respiratory problems, was given an echocardiogram. I was called by my doctor later on that day to say I had about 3 to 5 yrs to go before needing a replacement valve. At no time have I been contacted by the cardiologist about the results. I did call my primary doctor and got a print out but have no idea what it means. Should I be better monitored now?
Thanks in advance
Kathy

 

[scott.eitman]

Welcome aboard. I believe the answer is yes See a cardio and then get a 2nd opinion. Better safe than sorry.

 

[Hockey Heart]

Hi kfredbva1,

I am also new here. 36 years old diagnosed at birth with a BAV. Monitored with Ecchos every 2 years. At my routine Eccho this past September, it was discovered that the valve was getting worse and I would need a replacement in approximately 2 years. I have decided to do the surgery now for various personal and family issues but if I decided to wait, the plan was to do Ecchos every 6 months to closely monitor it.

If I was in your shoes, I would be very alarmed that my cardiologist never called me with the results (especially because they were bad results - worsening valve) and that I had to hear it from my primary doctor! I would seek out another cardiologist and make an appointment and find out what the plan was!

Best of luck to you and welcome aboard!

 

[DeuxofUs]

Kfred,

Not cool that they didn't contact you. Sometimes you just have to be your own health advocate and be pushy. Can you post your numbers? I too would get a second opinion. You need to keep on top of it. My valve has degraded quite a bit in the last year and from what I hear, when they start to go... they really start to go. So, you should be watched carefully. This is a fixable problem but you don't want to wait until you have symptoms either.

Welcome to our valve family

 

[kfredva1]

I am not sure what the #"s mean. So this is what I have on paper, hope you know the lingo:
RVDd 2.6 (0.7-2.6cm)
IVSd 1.0 (0.6-1.1cm)
LVIDd 3.7 (3.7-5.8cm)
LVPWd 1.0 (0.6-1.1cm)
LVIDs 2.7 (2.3-3.9 cm)
Ao root diam 3.3 (2.0-3.7 cm)
ACS 1.6 (1.5-2.6cm)
LA dimension 3.1 (1.9-4.0 cm)
LA Vol Index 15 <28ml/m2
LVEF (simpsons) 59 >50 %
tissue doppler E 11>=8 cm/s
tricuspid RVSP no
mitral valve max vel 0.9 (<1.3m/s)
DT 176 (160-240ms)
aortic Valve max vel 1.7 (<1.7m/s)
AIPHT NA
Pulmonic max vel 0.8 (.9m/s)
RVOT AT 134 (>120 ms)

states in overall summary: bicuspid aortic valve with trace aortic insufficiency, otherwise normal

 

[Lionheart]

I think that you need a better cardiologist. I had 10 years to monitor my BAV before surgery and my cardiologist did an echo every one or two years during that entire time to monitor the changes. You should find a cardiologist that does relatively frequent echos and one that will talk to you about the results after each echo. You may also need a good cardio to diagnose, monitor, and prescribe for other related issues such as high blood pressure.

Best,
John

 

[CATDOG]

Did you actually have an appointment with a cardio doc? Or did you just go for an echo? They are 2 different things, although sometimes scheduled together. My other doc just sent me for echos the first 2 times I went. I wasn't supposed to see a cardio doc the first time, but the one reading the test came running out after me to the parking lot. I had an HMO insurance, so I couldn't take the no-show appointment he offered since I didn't have a referral, but he did tell me some things and that was the first time I ever heard anything about expecting a valve job in 2-10 years. It took 2 more years of just echos before I got rid of that insurance and talked another specialist into writing a referral to see a cardio. My primary never did that. Glad I don't need referrals anymore.

 

[Greg a]

, a heart felt WELCOME to our OHS family glad you are getting some of the information that you are seeking and there is a wealth of knowledge here for the future .....
A list of acronyms and short forms http://www.valvereplacement.org/forums/showthread.php?27413-List-of-Acronyms-and-Glossary

what to ask pre surgery http://www.valvereplacement.org/forums/showthread.php?26668-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/forums/showthread.php?19034-Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well

As others have said you may need a whole new medical team