Just back from Mayo

[kfay]

Hi all. I'm just back from a very busy week at the Mayo clinic having what seemed like a million tests done and meeting an adult congenital cardiologist as well as the surgeon. I have been scheduled for my surgery to correct ebstein's anomaly (tricuspid valve replacement, asd closeure, etc...) on January 9th. However, after having been there in person, that date is going to be postponed. I had already decided that on my own before I went because it just wasn't good timing for my kids. I had my cardio here in Charlotte send the guys at Mayo my echo about a month and a half ago. As soon as they received it they called me and said I needed surgery asap. However, after seeing me in person, they aren't really sure what to do with me. They said that on the echo my heart is structurally very severe. They expected to see someone who was barely hanging on. Thankfully, that just isn't the case. They said that my heart and body have compensated very well for my defect. Needless to say, I "flunked" my stress exercise test. The surgeon's biggest concerns are that since I am only 44 and my own valve isn't salvagable I would need a pig valve. So, this would be my 2 OHS. He said theoretically, I could need another 3 in my lifespan. On the other hand, when people with Ebstein's start a downward trend, the surgery success rate goes from 97-98% to 70's-80'%, quickly.

So, I wait a long weekend and on Tuesday, they are going to present my case to see what the general consensus is about how much surgery to do and when to do it. I hate the waiting part, just want to know what needs to be done and get it taken care of. By the way, I can't say enough about everything at the Mayo. Everyone was great.

Thanks for letting me vent, my husband gets tired of hearing me go over the same coversations over and over again!!!

 

[Phyllis]

I'm glad that you had such a thorough and successful visit to Mayo, but I am sure that you are anxious over the uncertainty of the situation. It sounds like you are in very good hands and that they will come up with the best course of action soon. You are in my thoughts and prayers. Try to survive the next few days without too much angst and please report back to us when you hear. We are always here when you feel like venting.

 

[WayneGM]

Waiting for news in the worst part, but it sounds like you are in good hands. Hang in there. My best wishes are following you.

 

[geebee]

It sounds like you are in great hands and having extra time to really analyze things can be very helpful if a bit anxious.

I am curious tho. Does Ebstein's preclude a mechanical valve or have you already decided against coumadin? I am not trying to change any decisions, I am just wondering why the commitment to many more surgeries if each one is so progressively more dangerous?

Hope things go well for you. Please feel free to vent - that is one of the reasons we are all here.

 

[kfay]

I'm not sure why, but a mechanical valve is not the valve of choice for ebstein's, even with the prospect of repeated surgeries. I know alot of ya'll take coumadin successfully but I wouldn't be too crazy about the prospects of having to take it forever. My cardio actually wants me on it now because he is afraid that I will throw a clot across my asd but I figure if I haven't done it in 44 years I can risk another couple of months or so. The guys at Mayo weren't crazy about putting me on it either.

 

[geebee]

Thanks for the info - I am not familar with Ebstein's thus the question. I hope all goes well for you and you are through the surgery before you know it. Time does go quickly, especially this time of year.

 

[Bina]

Kfay, things are moving forward even if a bit slowly. Be glad that decisions are being made with alot of care and in your best interest. Try to relax and enjoy the holidays; or come here to vent.

 

[Isis]

Best of luck with your situation. Tuesday will get here soon enough and hopefully you can move forward to a positive outcome.

 

[Lynlw]

I'm not sure why, but a mechanical valve is not the valve of choice for ebstein's, even with the prospect of repeated surgeries. I know alot of ya'll take coumadin successfully but I wouldn't be too crazy about the prospects of having to take it forever. My cardio actually wants me on it now because he is afraid that I will throw a clot across my asd but I figure if I haven't done it in 44 years I can risk another couple of months or so. The guys at Mayo weren't crazy about putting me on it either.

I'm not certain about this but I BELIEVE it's like the pulm valve in the pressure on the right side is much less than the left, so higher chances of clots, which is why many/most docs recomend tissue for pulm valves

 

[Gnusgal]

I went to the Mayo for the first time in March! I saw Dr. Phillips and an EP (who's name escapes me right now). They certainly have things down like clockwork, don't they? I found it so interesting to get there and have a whole schedule of appointments filling up two days before I even knew what was going to happen. I actually ended up having surgery to implant a bi-ventricular ICD the same week I went. I didn't want to have to go back if I could help it... But then one of the leads moved and I had to go back in May anyway!

I know that the waiting and not knowing are the worst part. I hope that with the holiday excitement in the air you can put it to the back of your mind and knowing that the doctors there really know their stuff. At least you only have to wait over the weekend and not a month! Keep us updated and good luck!