Newly diagnosed BAV

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scuba_898

Well-known member
Joined
Apr 30, 2009
Messages
79
Location
Sugar Hill, GA
Let me start out saying this site has lifted a lot of anxiety, although i still have some.

My background in a nutshell is I was married this past december and diagnosed with BAV 2 months later in March. not the kinda news a newlywed wants. furthermore my cardiologist did not have a good bed side manor. He did not explain it to me very well and asked if i had any questions, of coarse i had questions but i don't know if i asked the right ones. he told me i could a lot of research on the internet, which i did and scared myself half to death. My wife doesn't like for me to look on the internet anymore, because of it. I have just turned 29. I played football all through highschool and lifted big weights. I am about 6'4" 265 I have lost 30 lbs since being diagnosed in early March. After football and college i started playing rugby. The doctor put me excercise limitations of lifting no more than 25 lbs and all the cardio that i want within reason. I later talked to his nurse and she said that cardio for me should be limited to walking and riding a bike. Which is a huge blow to someone of my size. He said that my valve is leaking at a moderate level and if it worsens then i would need surgery. I am scheduled to see him every six months, the only treatment that he put me on was BP medicine.

I am looking for a new cardiologist in the atlanta area, that has experience in treating BAV and has a good bed side manor.

I just joined today and have already read a lot of your stories. any suggestions that you may have for me would be greatly appreciated. I still need to find a cardiologist who has treated this in the atlanta area, get a second opinion, get clarification on limitations for exercise, and learn about all the surgical options available for BAV (mechanical, Bovine, Repair, Robotic etc).

I have learned a lot from your site about having to live with BAV. Seeing everyone who has had the surgery is inspiring to me. Another question is what kind of limitations are you all facing after surgery. Can you still have alcohol, run, jog, lift weights or are the limitations the same as i am now experiencing.

Sorry for the long intro, but i still have lots of questions. Thanks
 
Hi and welcome to this wonderful site! As you have already discovered, this site is full of great information. I think it is a shock for everyone who is diagnosed with BAV. How were you diagnosed? My husband was diagnosed with an ascending aortic aneurysm and BAV at 51.......he was totally healthy, no symptoms, and we were shocked! We are grateful that the aneurysm was found before it was too late. As you continue to wrap your mind around your diagnosis you will become grateful also! Knowledge is power so keep learning all you can.

We are from Tennessee and traveled to Cleveland Clinic for surgery. However, there are lots of active members from Georgia who will chime in with great doctor suggestions. Emory would be the place I would want to be if I were in your situation.

Best of luck and welcome..............
 
Welcome aboard Scuba!

You've come to the right place for support and information.

I *assume* you've read through much of the information in this (BAV and CTD) Forum.

The BIG Question for your Cardiologist / Surgeon is whether you have any Connective Tissue Disorder issues and possible aneurisms. A Chest CT or MRI is the Best Way to visualize the entire Aorta.

From what I read, the TOP AORTA Surgeon in the Atlanta area is Dr. Chen at Emory. Peachtree Cardiovascular Surgeons may also have someone of high caliber. Note that surgery of the Aorta is a Big Step Beyond "mere" Valve Replacement Surgery and requires additional skills that your basic Bypass and first-time Valve replacement Surgeon may not possess.

Hopefully someone who knows of good Cardiologists in GA will come forward. Personally, I would start with a call to Dr. Chen's office and ask if you can see him. Then ask him who he would recommend as a Cardiologist. At that point, he can advise you if you should wait, under the supervision of a cardiologist, or proceed with preparing for surgery under his care. When it comes to surgery and surgical questions, I prefer to consult with surgeons.

FYI, another GA resident recently had surgery with Dr. Chen after also consulting someone from Peachtree Cardiovascular. You might be able to find his posts by doing a Search for Chen or Peachtree.

'AL Capshaw'
 
Hi and welcome from another BAV owner and scuba diver...at least I used to be. :D

Good that you get a cardio with whom you are comfortable and able to converse with easily. That will be a great help.

As Al mentioned, you need to be carefully and fully evaluated for your condition, which is Bicuspid Aortic Disease, that can have implications well beyond merely a leaky valve. Many of us have issues with dilated aortas, etc. You need to get tests done (e.g., CT angio chest) to evaluate your entire aorta, for starters.

You've come to the right place here at VR.com. Keep posting and let us know how you make out.

Best wishes,

Jim
 
Activity post surgery

Activity post surgery

Different doctors make different recommendations to their patients about activity post-surgery. I will be having surgery in less than two months for a bicuspid valve and aortic aneurism. My surgeon told me that he would not restrict my physical activity following 3-6 months after my surgery. (My surgeon has treated several athletes and he plans to fix the aneurism completely during surgery, all the way up to the top of the aorta). I have heard that other doctors may be less aggressive in their surgery, and some recommend physical limitations. Honestly, the thought of no physical limitations was one that helped me choose my surgeon.

Red
 
Welcome. If you are looking for a new cardiologist you could look into one that specializes in adults with congenital heart disease. There is a list of these programs at achaheart.org I think. When I was looking for a new cardiologist it made me feel better that she specialized in my condition.
 
Hi, and welcome!
Getting the valve news is always shocking, but you seem to be handling it well.
I would read the Active Lifestyle forum to get an idea of limitations after surgery; there aren't many!
I assume you scuba. I had replacement four years ago with a bovine valve and have wondered if there would be any restrictions on my taking scuba instruction. It will be interesting to learn what you're told after you have replacement.
In the meantime, make yourself at home and once again, welcome!:)
 
Welcome to our little "club." This is the place to find answers to most of your questions and many folks who have walked the same path that you're about to travel. The good news is that we're still here and ready to guide you on your journey. Learning that you have BAV is a shock at any age, but in the end it's always better to know what you're facing than to to be left in the dark. Good luck and keep reading and asking questions.
 
Hi Scuba
welcome to this fantastic fourm. Had my valve replaced 2 years ago I was a Soldier then and i am still soldiering and passing my fitnessoggin tests ! took me a while to get back running but now I am joging on !

Enjoy

J
 
Scuba
You would not be normal if you did not have some fear. I have not had surgery yet that will be late this month or next. I am retired miltary and been an athlete my whole life. You know big strong guys are not suppose to cry. But I did when I got the news. I ordered Adam Pick's book on heart valve surgery. That helped but it also led me to this site and much research. I still don't like the idea that I am looking a heart surgery but feel much better now that I know the facts. Do your research, be informed, find the best doctor and facility for you and yhings will be fine. Having good health other wise is a huge plus. Welcome. You will find help, knowledge and support from folks who both understand and care here.
 
Scuba
Did the Doc. say anything about am aortic aneurysm? One thing you will be facing is valve selection. Research the options to include the Ross procedure and evem more important reseach you doctors.
 
newly diagnsed BAV

newly diagnsed BAV

Scuba -

I had my bav and aorta surgery two years ago this month. It sounds like your first cardiologist was a real jerk. Let me refer you to my cardiologist, Dr. Nabeel Hafeez, at Northside Cardiology (http://www.nscatl.com/staff.htm). He is very thorough in his exam, testing and explanations. I live very near you in GA. I live in the Hamilton Mill area of Gwinnett.

In the months, leasing up to my surgery, it was helpful for me to talk with someone about the future I was facing. Feel free to private message me and I will forward my phone contact information.

Bill L.
 
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