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bill hall

Member
Joined
Sep 15, 2011
Messages
21
Location
Potomac Falls, VA 20165
All - I joined VR.com in August 2000 and had my aortic valve replaced with a homograft and mitral valve repaired at Cleveland Clinic in Jan 2001. I was one of the first to join before surgery and I am forever grateful for the help. I continued with VR.com for many years. In 2007 they found a pseudo-aneurysm on the suture line of my aortic valve replacement. Johns Hopkins saved me from surgery by inserting a plug in the pseudo-aneurysm. Now the plug has disconnected from the tissue and the pseudo-aneurysm threatens me.
I have several concerns about this upcoming surgery. First, they had a hard time restarting my heart at Cleveland. It is ten years later and my heart is afib and EF is down. I wonder about my chances and if anything is improved in this area or maybe something I am not aware of. The aortic valve is actually working well, but ten years old. The pseudo-aneurysm is dangerous and I wonder if the aortic valve should be changed. The time to do both might be too long. I would welcome any opinion from this group. I know we are patients, but any tidbits of information might help my confidence or direction. Thank you all once again.
Bill
 
Hi Bill! I'm sorry to hear about you needing surgery again. I know there are new techniques but I don't know of anything specific that would be helpful. I think though, just having the knowledge that your heart was reluctant to restart last time would be a heads up to the surgical team that they may encounter that again. My heart didn't restart on it's own either but the bottom line is it did. I can understand the A-fib but why the low EJ? How low?

I'm sure you have a really good surgeon and you don't have much choice but to pray that he makes wise decisions all through the process. Do you have any dates yet?
 
Hmmm... Sorry about the re-op, that's just frustrating. I don't know of any "new" techniques out there vs what was available 10 years ago. The biggest rage right now is TAVI ops that seem promising for valve jobs without aneurism issues. I don't say this kind of stuff often but something tells me that if you have to endure another surgery it will all work out just fine. I don't know you, and I don't know your situation but something tells me it will work out for you in the end.
 
Hi Bill,

I just went through my re-op 1 year ago. They had to replace my mechanical aortic valve due to pannus. They also found an aneurysm that they had to address. they "coiled" it off, to block blood flow into it, and reduce the risk of a rupture.

You do raise a good point in that since you will already be in for surgery to repair your aneurysm, should they also replace your tissue valve that is 10 yrs old. Have you brought this question up to your doctors attention? Curious as to what they think on this.

Personally, I think that I would get the 100,000 mile checkup. If the projected life of the existing valve is 5 yrs or less, I would highly consider getting it replaced while they are in there.

Prayers going your way to help you through this issue.

Rob
 
Bill, I, too, cannot be of much help other than to point out that my surgeon says the risk for a second surgery is little different from the first. As another guy with a tissue valve, I can appreciate your concern with respect to the state of your valve. In your place, I would sit down with my surgeon and discuss this specific issue and get his take on the possible scenarios depending upon what he finds when he is "inside". I hope you will continue to share with us what happens as you prepare for whatever is to happen. Thinking about you.

Larry
 
I would strongly consider replacing the valve. The research I had seen last year was that Homografts mean life is 12 years. Many get less years and many get more, I got a hair over 12. As I am sure you are experiencing, once going through this surgery, you do not look forward to a reop, so why not replace something that most likely has a 100% chance of needing to be replaced in the very near future anyway.

I am surprised that you say the AV is working well, yet you also state you have a low EF. Mine was 45% just 2 months before it started to really fail.
 
Hi Bill,

I remember back in '05 when I was a newbie to vr.com and facing surgery and then living in Northern Virginia not far from you, you were one of the folks who gave me great advice and reassurance.

Don't know that I have any knowledge to pass along pertaining to your current challenge, but I certainly send along my best wishes. As you know, there are some great heart institutes/hospitals in your area. I gather you are going with Johns Hopkins? If you need a second opinion, may I suggest Dr. Speir and his group at Inova Fairfax? Dr. Speir has been kind enough to look at tapes of my scans and echos done down here, when cardios down here were having a hard time interpreting them. I hold the Inova Fairfax folks in the highest regard, so if you want another perpsective, you might consider them.

Will certainly keep you in my thoughts and prayers.
 
Thanks for all the great replies. Betty, it seems we sat next to you at a reunion dinner in Las Vegas in 2002. You gave out some golf stuff from Pinehurst. Julian, thanks for the optimism, I need that. Cooker, I have read many of your past posts, thanks. Rob, I did talk to a surgeon after the cath and he said to replace the valve. I remember you from way back. Scott, thanks for the firm advice. Larry, thanks for the idea that the second surgery might be about the same as the first. Bob, thanks for the Dr. Spier recommendation. I do remember when you joined. I am working in MD and my daughter works here, so I will probably have it done at JH. nnabwh, thanks for your reply.
Bill
 
Hi Bill, I don't have any information about pseudo-aneurysms but can tell you that I was an AVR patient earlier this year at Hopkins. My surgeon, Duke Cameron, is masterful and so humane. When I had my pre-op visit a big concern was being intubated because years ago my uvula was damaged when tubes were taken out and I felt like I was choking for 6 months. I also had fears of anesthesia because of vivid recollections of having ether for two childhood operations. When I left his office I had to go to several floors of another building for testing and was very surprised that Dr. Cameron had dispatched a staff anesthesiologist to track me down and we spoke for about 20 minutes. My fears were allayed and my anesthetization went very well--other than very mild "pumphead" for a few days I had no aftereffects. Best of all, the tubes were already out when I woke up after surgery and I felt like "me"--well, a groggy/slightly loopy me --right away.

My treatment in intensive care was expert. My sharpest memory of that time is about 24 hours after surgery when I saw another patient brought in from the operating theatre. His (or her) bed was surrounded by a dozen specialists and I have never seen such rapt attention and detailed monitoring. Knowing that they had done that for me was amazing and I am still so touched thinking of it. During my time on the critical care floor I had the same feeling of intensely competent care at every level.

I hope your surgery will go very well. Pat
 
Hi Bill.
We met at the Orlando reunion. It was only a few months before Granbonny's death. I believe at the time you knew about the pseudo-aneurysm and thought you would have to undergo surgery. I remember we were all very concerned. I'm glad to read that you were able to postpone it but wish you didn't have to go through it now.
My heart was also hard to restart. I've thought about it since my 2005 replacement, but it seems from reading posts from newer valve recipient members that they have made some dramatic advancements in just the past five years, so I hope it will be a non-issue the next time around.
What is your EF? Have they offered you the option of not replacing the aortic valve or do they want to do it now?
I'm not in your position, but if the aortic valve is still working well, I would be tempted to leave its replacement for a later date.
Best wishes and hope to see you again at a future reunion.
Mary
 
Mary - Thanks for the response. Yes, I remember you from the Orlando reunion, but could not remember if it was before the plug was inserted. Thanks for your comment on the heart restart, it is my biggest worry. At the cath, they told me my arteries were clear, so maybe I have some advantage. They have not told me the EF, but I will definitely ask.
Bill
 
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