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JoeG

I would first like to thank you for taking the time to read my thread. My name is Joe and I am 33 years old. I have just found out that I will be undergoing AVR and possibly replacement of aorta. My valve is a bicuspid congenital problem. My wife found this website so we thought we would try and expand our research. It seems that all arrows are pointing to a mechanical valve due to my age (but we are open for more information) as to prolong the next AVR. Does anyone have any stories on the recovery process?

My Surgeon believes he may be able to use a "Minimal Invasive" process where, if it is only an AVR and not aorta replacement, he can enter through the side of the breast plate and not through the chest cavity. My Surgeon, Dr. Riley said he is one of two surgeons doing this procedure in AZ where I live. Has anyone heard of this process?

My wife and I believe that I should come out of surgery fine since I am rather young, no blockage in arteries and fairly healthy, but I would like to hear of some things that I may not be told from my surgeon as far as side affects from the coumadin.

We just found out two weeks ago that I will need to have this surgery over the next month, so again thank you for taking the time to respond.

Joe
 
Hi Joe!
You just happen to live in a hotbed of VR member activity, so I'll let the members from AZ address your question about surgeons in the area doing minimally invasive surgery.
Is your valve stenotic or do you suffer from regurgitation?
Regarding the recovery process, if you check the post-surgery forum, you'll find many, many threads dealing with recovery.
Welcome to VR! Sit back, relax, and make yourself at home!::)
 
Thanks Mary!! My valve is a regurgitation at a severe stage. I will look into the threads.
 
I would go mechanical but that was the decision made for me at 13. I am 31 now and am going mechanical again for plan A. The valve is still functioning but with endocarditis damage in my heart I need to have another surgery.

I think the possibility of avoiding surgery in the future wins with me. The coumadin has little annoying things about it, but ultimately I have grown to live with it extremely well.

Different people have different opinions. I personally think though for young men mechanical valves make much more sense.
 
Welcome - you (or your wife!) found the perfect place! I had my mitral valve replaced when I was just about your age. That was over 17 years ago and life has been great.

If you decide to go with mechanical, read and view the stickies in the Anticoagulation Forum at this site. And tell your doctor that you plan on home testing your INR. This will give you lots of freedom.

Feel free to ask any questions, and your wife too!
 
I wonder if I will fill more active once I have recovered? Currently I feel drained most of the time.
 
JoeG said:
I wonder if I will fill more active once I have recovered? Currently I feel drained most of the time.
Click to expand...

I would venture a guess that several months post-op, you will feel much more energized.:)
 
My Surgeon Dr. Robert Riley has completed approx 2,000 heart surgeries with 30% being AVR. What type of experience should I look for?
 
Hi Joe. Glad that you found us! The members here are amazing. Ask a question and get multiple answers in minutes. Boy, if you can go minimally invasive, that is awesome! I'm fairly young myself (37) and have been healing very quickly. And that is after having my chest cracked open so I am sure you will do even better than I.
 
Hi Joe and Welcome to the forum (oops, and your wife too).
I have a mechanical and the surgeon made that decision for me; saying that I would probably wouldn't want to this surgery again.
Please don't be afraid of the warfarin and YES you will feel more active once you fully recover. My S/O has problems keeping up with me.
 
Hi Joe, I guess my questions would be WHEN would they/he decide he needs to replace your aorta? It would be a shame to open you min and then have to open your sterum when they saw your aorta needed replaced. I don't know of Dr. Riley off the top of my head, I don't remember anyone going to him, you could try a search here and see if anyone did.
They are moving pretty fast since you found out 2 weeks ago, but were able to talk to the surgeon already.
 
Lyn makes a good point. Have you had a CT scan done yet to check the size of your aorta?
 
Freddie said:
Anything can happen Lyn and Karlynn.
Remember I was said and done within 5 days.
Click to expand...

I know that Justin had surgery the day after a routine cath. But IF there was a chance they would have to replace part of the aorta, I would want to know before they opened me for a Min invasive and then had to reopen me after they saw my aorta.
 
Welcome Joe I am new also. Look at the pre surgery thread with the siticky on questions for your surgeon. If he is reluctant to share things like motality rate etc he may not be the right guy.
 
Joe, as far as being active after AVR, check out the Active Lifestyles forum. Have you decided which mechanical valve you'd like or are you leaving it up to the surgeon? Al Capshaw is our go to guy for On X, which is what I have. I'm very happy with it. I had a cardio check up last week, echo and carotid scans, everything is perfect, no changes from last year and I'm not quite 2 years post op. I asked my cardio if he could hear my valve, he was sitting about 2 feet from me. He could hear it but I could not, he got a good laugh and said the fact that I can't hear it is what counts.

I agree with the other comments, ask for a 64 slice CT on the aorta, Duffman has cool pics so if you search on his name, you can locate his posts and pics of his CT.

I wish you the best of luck with all of your decisions. They are yours, with guidance from your cardio and surgeon.
 
JoeG said:
My Surgeon Dr. Robert Riley has completed approx 2,000 heart surgeries with 30% being AVR. What type of experience should I look for?
Click to expand...

Since you have a Bicuspid Aortic Valve, you should look for a Surgeon who Knows how to assess the condition of your Aorta AND has the Knowledge and Experience to repair / replace it if it shows signs of Aneurism and/or Connective Tissue Disorder. This is a BIG Step above / beyond 'mere Valve Replacement'. The Best Tests for imaging the Aorta are a Chest CT or an MRI of the Chest. I'm pretty sure that if you need your Aorta repaired/replaced, the surgeon will need to do a Full Sternotomy to have adequate access (and you wouldn't want anything less!)

SOME of our members have had successful Valve Replacements only to need to have Aortic Repair / Replacement because their (aorta) condition was NOT detected / treated at the time of their First Heart Valve Surgery.

Ask your Surgeon how many Aortic Aneurisms he has repaired / replaced. If the answer has only 2 digits, MY Non-Professional recommendation would be to Find a Surgeon who has performed hundreds of them. (BTW, at 2000 Heart Surgeries, most of which are probably Bypass, your guy sounds pretty young and 'new to the trade'. One of the High Risk / VR / Transplant Surgeons at our state's University Hospital is reputed to do 600 surgeries per year and he's probably been doing this for over 2 decades, maybe more.)

Some of the Top Aorta Surgeons that I recall from posts to VR.com are Dr. Craig Miller at Stanford in SF, CA, Dr. Laks at UCLA?, Dr. William Ryan in/near DFW, TX, Dr. Coselli somewhere else in Texas, and Dr. Kouchoukas(sp?) in MO.

Unfortunately, two of our most knowledgable BAV / CHD members have been conspicuous by their absense of late.

'AL Capshaw'
 
Hi Joe, welcome to the forum. You and your wife seem to have a great attitude and i'm sure you will do well. Very best wishes, you have found a great place for all those niggling questions.
 
JoeG said:
I wonder if I will fill more active once I have recovered? Currently I feel drained most of the time.
Click to expand...

Welcome Joe, you will find this forum very helpful. I wish it had been around 42 years ago when I had my valve "installed":). I was 31 and had no choice other than a mechanical valve (tissue valves had not hit the market). In retrospect, that was the right choice since I have needed no further surgeries. If you go "mechanical" it will require anti-coagulant therapy (warfarin). That isn't a problem so long as you take warfarin as prescribed and test regularly.

Odds are that your activity level will increase after you get "fixed" and you will be able to do whatever you choose to do. I have always been able to do whatever I wanted to do. Yesterday, I played nine holes of golf with a couple of young men that were less than half my age. They could outdrive me by 40 yards:mad:......but they rode in a cart:confused:....I walked:cool:. In fairness to those "kids", they continued on to play the back nine and I didn't. When I play 18 holes I have to ride too:eek:.

Good luck to you:D.
 
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