BAV Newbie Here

[JeffF]

Hello All,

I just wanted to say hello and thank you. I have been reading your posts for a little over a week now and have to say they have brought a lot of comfort to me. I was diagnosed 2 weeks ago with BAV and severe AI and have been told that I will need surgery in the next 4-6 weeks. Needless to say my life has been somewhat turned upside down (as many of you know first hand).

I live in Northern VA and have been referred to John Hopkins by my Cardiologist. I have my first visit with Dr. John Conte next week. Does anyone have any experience with Dr. Conte and John Hopkins?

Thanks in Advance.

Jeff

 

[neil]

hi jeff welcome aboard this great site,cant help you with the docs but sure somebody will come along soon..........

 

[JeffF]

Thanks Neil!

 

[dick0236]

Welcome Jeff. It's a helluva note :eek2: to get this kind of news anytime...and especially when you are young.....been there. Stick around, this site has the best "real life" experience, advice, and support you will find:smile2:.

 

[Duffey]

Hi Jeff, nice to meet you but wish it were under different circumstances.:smile2:

I see you replied to Bill Hall's thread about surgery at John Hopkins. Bill's surgery was a very complicated case, and since he is now at home and doing well, I think that speaks favorably to your question about John Hopkins.

I know you have been dealt a jolt with the news about your valve, but your age is a big plus in your favor. I bet you're going to do real well with your replacement. Please let us know how your surgery consult goes.

Best wishes,
Mary

 

[JeffF]

Thanks ****.

Thanks Mary, I will keep everyone updated.

 

[camgough]

Good luck. I got the same news at 30, and am on the otherside of surgery now. You will be fine!

 

[JeffF]

Thanks Camgough... How was your recovery?

 

[DebbyA]

Hi Jeff, and welcome! I'm sure this was a shock at your age. I lived in Northern VA until this August. I think it would be worth a call to your cardiologist to ask about surgery at Inova Fairfax (unless you've already discussed it with him). It is not just your 'local' but one of the top cardiothoracic sites in the country. If you post with a geographic term in the title, you'll get the attention of members who have been there--or to Hopkins.
Best wishes,
Debby

 

[JeffM]

Hi Jeff - Another Jeff from Northern Virginia here. I had the same surgeon as DebbyA, Dr Speir at INOVA Fairfax. Highly reputable program and he's the surgical teams lead guy as well as their aortic specialist. I'm very pleased with my results. I am back to doing all the athletic stuff I was doing prior to my surgery....minus the a-fib. Also, since I live in Fairfax, it was easy for family and friends to stop in and see me. On the other hand, I was only in the hospital for 3 nights. You should go where you're most comfortable, but it can't hurt to check out a couple options and INOVA Fairfax has one of the best Cardiovascular departments in the country and their nursing program trains other hospitals.

If you have any specific questions feel free to send me a private message.

Jeff

 

[JeffF]

Thanks guys. My Cardio was adamant about Hopkins (he did his training there and knows a lot of the surgeons so a lot of bias I'm sure).

I'll have to look into FFX Inova if I don't get a good feeling at Hopkins. Thanks for your input, much appreciated.

 

[Bobby81]

Jeff,

I'm pretty new to the forum and I'm in the DC area as well. I was diagnosed with BAV with mild/moderate regurgitation early this year. My numbers are still ok so I'm just being monitored on a regular basis for now. I'd be interested to hear how your Hopkins appointment goes. You are in an great area and either Hopkins or Inova Fairfax will provide excellent care.

- Bobby

 

[JeffF]

I'll let you know Bobby...

 

[drivetopless]

Hi, JeffF-
Just wanted to say "Welcome" and good luck. I was diagnosed when I was 33, so I can relate to the shock. I was fortunate in that I didn't have to get surgery for 13 more years. What is your aortic diameter? Just curious.

 

[JeffF]

Drive~ 13 years is a long time in the waiting room. I don't know what the aortic diameter is. I looked at both my ECHO reports and couldn't find it. I know one of the main concerns is the LV has been getting big. There is no stenosis at this point, just severe insufficiency. How do you like the mechanical valve?

 

[Marguerite53]

Hi Jeff
Just wanted to welcome you to this wonderful community. You will find great support here.

My very successful surgery was over 5 years ago. i was just a little younger than you are now when I found out about my BAV, but I did not have surgery until I was in my early 50's (and mine was a result of stenosis). Everyone is different! Also, this is such a very personal event in everyone's life -- many of us get very, well, almost possessive about our success and our experience.

It sounds as if you are building a good relationship with your doctor. Keep at it. The surgeon relationship is important initially, obviously, for the surgery, but it is the cardio who will follow you along through your life. That your cardio feels very strongly about Johns Hopkins and their surgeons is fantastic! I hope you get a good feeling when you go into your meetings. Because things need to happen rather quickly for you, you may need to rely on your instincts and your faith in your cardio. As long as you can maintain confidence and optimism I just cannot imagine that you could go wrong at such a prestigious place as Johns Hopkins.

At some point your brain will start to feel like it is going to explode because you are trying to learn all that you can. We've all felt this!! Please use us to field any anxieties as the time gets closer.

Wishing you well!! Let us know how your surgical consult goes. Go in with a list of questions and don't leave until he has answered every one. Don't be intimidated. Enjoy shaking the hand of the man who will hold your heart. Stay positive!

Marguerite

Oh... I grew up in Silver Spring :wink2: but moved to Oregon (the land my ancestors came to by covered wagon) to go to college.

 

[JeffF]

Thanks Marguerite for the well wishes. I really like and trust my cardio, so I feel great about going to Johns Hopkins for the procedure. I will let you guys know more after Thursday.

Waiting to find out the details is pretty nerve racking.

 

[JeffF]

Hey Guys,

So I just wrote an update but for some reason it didn't post and I couldn't retrieve it (ugh). Anyway here I go again. So I had my surgical consult late last week and it went well. Dr. Conte was great, very nice and straight forward. Going into the consult I had almost made up mind to go with a tissue valve. Dr. Conte told me a lot about the mechanical valves and made some great points regarding them. Some of his points for going with the mechanical were: Possibly not having to have surgery again, a new ACT (Direct Thrombin Inhibitors that are to be approved by the FDA) which allows you to not have to monitor your blood, and no real diet or activity restrictions (except full contact sports).

I had originally thought that I would go with a tissue OHS and then a mechanical in 10+ years through a TAVI method. However, if I were to do this then I would have to get a smaller valve since the mechanical would be placed inside the tissue. And I am not really sure how the smaller valve would effect me.

So now I have decisions to make. How many of you guys sought a 2nd opinion? I really hadn't thought about getting another opinion, but I think if ever someone was to get a 2nd opinion OHS surgery would be a good reason to.

Thanks in advance!

 

[Duffey]

I received a second opinion but it wasn't to determine valve type. Originally I intended to undergo the Ross Procedure with Dr. Paul Stelzer in NYC; however, I visited with Dr. Kouchoukos in St. Louis (much closer to home) and he let me make the decision regarding which valve I wanted.

I don't want to sway you either way, but 32 is young for a tissue valve unless you are completely ok with undergoing another replacement fairly soon. I was 53 when I received my bovine, and my decision was based on the assumption that I would need it replaced in 10-15 years.

Did he give you a timeframe for surgery?

 

[JeffF]

Thanks Duffey, I need to get it done within 8 weeks...