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Beha

Well-known member
Joined
Nov 15, 2008
Messages
77
Location
Chattanooga, Tennessee USA
hello,

I've been hanging out on the Adult Congenital Heart Defect boards for awhile and noticed alot of them come over hear when their headed for valve replacements so I thought I'd jump on the bandwagon.

Long story somewhat short- Born with pulmonary stenosis (1984)- corrected w/ OHS (pulmonary valvectomy) at 19 months. Pretty normal life since then (somewhat lower exercise tolerance than my peers- thats about it). Found out about 3 years ago that my aortic valve was leaking. I've been having increasing symptoms for the past couple of years and found out a couple of months ago from my card (and then follow up with surgeon) here in San Antonio that the AV valve leak is now moderate/severe, the tricuspid has a mild leak and that plus the absent pulmonary valve are starting to cause right ventricular dilation so its time for a valve replacement sometime in the next couple of months! So they need to replace the PV and repair (hopefully) or replace the AV.

So I'm moving back to my parents in Chattanooga, Tn until this is all taken care of (and also until (another hopefully) grad school next fall).

Appt. at Emory on Dec. 3rd for ANOTHER echo/ekg/bloodwork/etc + meeting with surgeon and hopefully scheduling the surgery.

So, you guys seem friendly, hows it goin?
 
Hi Beha. Sorry for what you are going through. Happy you came over here to say "Hi" to us. Just want to say Welcome.
 
Welcome Aboard Beha !

An important lesson some of our members have learned the hard way is the importance of having a Plan B "just in case" your first choice does not work out or is not viable.

SO, if your Aortic repair cannot be done for whatever reason, have you thought about whether you would like a Mechanical Valve (possible lifetime valve but requires Anti-Coagulation medication Coumadin / generic Warfarin for life) or a Tissue Valve (usually does not require anticoagulation after 3 months BUT will wear out eventually and wears out faster in younger patients).

Young Women who want to have children often opt for Tissue Valves to get them through pregnancy, knowing they will need another replacement several years later.

You may want to browse through the Valve Selection Forum, starting with the "stickys" at the top of the Forum Listing. Also browse around in the Anti-Coagulation Forum (starting with the "stickys") to learn the truth about living with / on Anti-Coagulation medication.

When it comes to Mechanical Valves, I'm a big believer in the technological advancements offered by the relatively new (1996) On-X Valves. See www.heartvalvechoice.com and www.onxvalves.com for a more detailed description of those benefits. (Emory Univ Hospitals offer ON-X valves and sponsor the FDA approved study on NO / LOW anticoagulation for On-X recipients).

If you are interested in a second opinion, see www.PeachtreeCardioVascular.com for a listing of their 11 surgeons and their specialties including minimally invasive surgery and daVinci Robotic surgery. They are also in Atlanta.

That should keep you busy!

FWIW, Texas also has many Excellent Heart Surgeons.

'AL Capshaw'
 
Welcome and hello i am glad to see you posted

looking forward to hearing from you and welcome to

our waiting room to,as you probally know waitings the worst

im waiting for my 2nd surgery to happen soon i hope.

zipper2 (DEB)
 
Welcome, Beha- so glad you joined us. You have already gotten all wonderful advice from Al. I hope you stick with us and let us help you through this.
 
Hey guys!
Thanks alot.
I have thought (and am still thinking) a lot about valve choices. I have to choose a definite pulmonary valve and a aortic valve is case of plan B. I have investigated the ON-X valves- I wish they made a pulmonary one! I'm leaning towards tissue at this point because i do want kids at some point but we will see what the surgeon says in December.
And yea- I know Texas has awesome heart surgeons. I've been seeing one! It's just alot more logistically feasible for me to go back to Chattanooga for awhile.
 
welcome beha!!

i am glad you joined, this is a great site and great people.!!!!
 
Welcome aboard, Beha

Yes, it is time for surgery. I hope all will go well and you regain your energy and health after the surgery. My health was deteriorating for a long time and now it is a miracle and I am enjoying my newself. Wish you the same.

With prayers,:)
 
Welcome

Welcome

Hi Beha,

Welcome to the group! The people on this site continue to help me through all the stages of the operation, and they will for you too.

Waiting (for me) was the hardest part of the whole surgery process. It will all be over soon and you will feel much better! I too had aortic regurgitation and I opted for a tissue valve as I want to have children soon, but even if I didn't want children I would have still gotten a tissue valve. I am on no medication, and I really like that, but everyone is different and the decision of a valve choice is a personal one.

Hope the move to Tennessee goes well. Keep us posted.

Erica
 
Beha - It sounds like you understand the basic tradeoffs and are making appropriate preparations.

Just an FYI, one of our members, MNmom, received a Bovine Pericardial Tissue Valve in the Aortic position at age 20, had 2 kids, and had the valve replaced at age 30 (which is about half the expected lifetime for that valve when implanted in patients at age 60 or older).

You may want to discuss expected durability of the various tissue valves in a young adulf female with the surgeon(s) you interview.

Best wishes
 
Welcome to the group!

This week I was at Emory Healthcare for my six month echo which still shows no change. My AV valve leak is moderate/severe and I have been in the waiting room for 14 years. My doctor did add another heart drug to my list. Dr Edward Chem is the surgeon that my cardiologist likes. We have had some other member from this form that has used Dr. Chem. For cardiology the top doctor is Stephen Clements.

Best of luck!
 
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