one for the “repair vs. replacement” debate

[rdouglas302]

1 week 3 days post op (from round 2); wanted to share my story. The short, a little over 3yrs ago I was diagnosed with bicuspid aortic valve with moderate regurgitation. To my knowledge I never experienced the first symptom. I began visiting a cardiologist routinely with the knowledge that one day it would be time to get my valve replaced. I guess the name of the game is to wait for as long as possible. Then a surgeon in Germany and personal friend of my family convinced us that he could repair my valve and I could hang on to my native valve and be done with it. This sounded great! After researching the insurance, etc. we quickly realized it wasn’t going to happen….but it was too late, I had the repair fever. I started looking within the US for surgeons who considered repair b/c no surgeon (that I know of anyway) in Atlanta would spend any time on the subject. I found a surgeon at the Cleveland Clinic who is extremely experienced in aortic valve repair and I sent my information immediately. I got an appt. and headed to Cleveland in February. After an entire day of testing I got to meet the surgeon face to face. I still experienced no symptoms from the condition but the size of my LV indicated that it would be time soon. So from there we made our plans and surgery would be in October……reality quickly set in.
We arrived in Cleveland on October 12th and surgery was on Thursday the 14th. The surgery went very well, I didn’t feel a thing . The surgeon walked into the room to talk to my wife with a huge smile on his face. His words were something to the effect of “it’s perfect…it went perfect. It was an ideal fix, there was no leakage and it’s as if he’d never even had this.” So my wife was ecstatic and so was I when she told me in the ICU; after I stopped forgetting…I think it took about 9 or 10 times to set in.
Saturday morning rolled around and it was time for my follow up echocardiogram. Not that I know how to read these by any means, but I’ve seen quite a few by now and I thought there sure was still a lot of “red” in this thing…but I didn’t think too much of it. Well, next thing we knew a cardiologist walked in the room with news that he’d reviewed the echo and it was not so exciting anymore. There was a leak that they were seeing that was “pretty bad” and I’d need to have an esophageal echo to see exactly what was going on. Monday was the day we were expecting to be discharged and remain in Cleveland for a couple of days. Instead our news was the leak was so bad that I’d need another operation right away….more than likely the valve would have to be replaced. The conclusion was the repair did in fact work well at first, but my valve tissue couldn’t hold the suture and basically tore apart.
All of this being said it just goes to show there are no guarantees on anything in this game and anything can happen. I don’t regret going for the repair at all, but apparently it wasn’t meant for me so thank goodness it failed as quickly as it did and the wonderful people at Cleveland clinic could do what needed to be done right away. I was back in the OR last Wednesday the 20th and opted for the bovine valve. That was the best decision for me personally based on my lifestyle as it is right now.
It’s very difficult to cram all of my thoughts about this into this one (very long) post but I’d say I got the story across at least. I hope that some of you will share your thoughts as well. Although I’ve not been one to post a lot on this site, it sure has been a lifesaver at times over the last few years!

 

[carolyn]

Simply amazing what you went through and how very matter of fact you've reported this journey - impressive - your first surgery was the same date as my father's and same location: agreed with the adjective, wonderful to describe the staff of the Cleveland Clinic

 

[Maryka]

I think the bovine valve was a good choice for someone who really would have rather had a repair instead of a new valve. I was 60 and hoped to NEVER have to have another OHS, so I chose a mechanical valve. It is all a crap shoot, of course, but I think my odds are better for never having to have OHS again and I am glad!

 

[Lionheart]

Thanks for sharing your story. It must have been difficult to go back into that operating room after feeling the joy of already having it done. But you did it. Good job! Once you heal up from the surgery I am sure that you will feel like a million bucks.
Best,
John

 

[Duffey]

My goodness . . . you've experienced a lot of valve surgery during the past 17 days! :eek2:I have a bovine valve, it was implanted five years ago, and so far all is well. I hope you get many years of usage from the new valve. Thank goodness you were at CC where they could do the turn around surgery quickly.
Best wishes!:thumbup:

 

[Jkm7]

Thank you for sharing your story. For me, it hit home. My Mass General surgeon hoped to do a repair on my valve but I made it clear to him that if he wasn't really, really happy with how the repair went, I much rather have bovine replacement than a failed repair. This was my second OHS in four years. Even with his huge skill and excellent team at Mass General, he declared the repair he did to be not to his satisfaction and went ahead with bovine replacement at that time. I am extremely grateful to him for that.

You seem to be doing exceedingly well especially considering all you have been through.
Hope you have a bump free recovery and will chat again with us from time to time to let us know how you are doing.
All best wishes.

 

[Duff Man]

I appreciate you sharing your experience. It makes me even more confident in my plans for valve choice, and probably could save some lives of other readers.

 

[rdouglas302]

Thanks for all of your replies. It was a lot to take in. I didn't really react when they told me i'd be back on the table the next day...i was just numb! I couldn't really believe it. I sure do appreciate all of the best wishes. I know there are many that have been through way more than me, so I try not to complain. I may be rushing it, but I just hope my energy comes back soon. After all, this is supposed to make us feel BETTER, right??

 

[carolinemc]

Not all repairs go in this direction. I had mine in 1973. It kept hold till 2001. I know that when i had mine, it was experiemental on children, I was eight years old at the time. But, as with any repair, there is no guarantee it will work. At least they were monitoring you and got the what neede to be done, done. You are still here with us and your family. Just take things one day at a time. Take care.