Could someone help me understand?

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Thank you all for all your advice and concerns. I just wanted to update everyone after having had my second opinion at Mayo Clinic. My cardiologist also recommended I have a stress test done so I could see where I'm at to be able to work out again which I did earlier today.

All I have to say is what a difference!! The difference between Abbott in Minneapolis and Mayo is huge (in my opinion). At Abbott it just seemed like no one gave me much information outside of what I asked. At Mayo, I left for home with so much information I didn't even know where to start. They gave me books, packets, video's...the works. The nurse knew I was there for a second opinion and wasn't sure yet if I would end up having the surgery there or not so she told me she wanted to make sure I had all that information incase I didn't. They did more thorough tests on me, explained all my numbers to me and overall I left Mayo feeling so much better about everything that I cried with relief when I left. I don't mean to talk bad about Abbott because I do know they are very good as well, even the cardiologist at Mayo said that. I just felt so much more taken care of and comfortable at Mayo.

I was also told by the surgeon at Mayo that if I chose to get pregnant right now I would be able to without much risk.
I don't have my medical records on me right now so I don't remember the exact numbers, but I do remember that Abbott had my aortic valve area measurement at 0.8cm sq and Mayo said it was 1.11, I believe. Mayo said everything is moderate. Abbott told me it was almost severe. They also told me to keep my heart rate under 140 and to do no more than 20 mins a day of vigorous exercise. Mayo just gave me the go ahead to do all the cardio I want as long as I kept my heart rate under 180 (which I just about got up to during my stress test and I really don't think that will be a problem) I still can't go back to bodybuilding like I was hoping, but hey...at least I can get back to cardio so I can shed the 15lbs I've gained since quitting smoking and quitting working out! Mayo also did explain to me why there was such a difference in opinion compared to Abbott and Mayo which also made me feel better.

All in all I feel much, much better about everything and it sounds like it will be awhile yet before I have surgery. The surgeon did tell me I will most likely have to have my ascending aorta replaced also which I suspected anyway.

Thank you all so much for your input and suggestions and just for listening. I always appreciate everyone's opinions and experiences to help give me different perspectives and to help keep me open minded. :)

Carista
 
Carista,

I'm SO glad to see that you went through with the second opinion from the Mayo Clinic. It makes such a difference when you find doctors who really recognize and understand your condition.

I'm very impressed that the Mayo Clinic staff went out of their way to be sure you were informed and prepared. It is especially encouraging to see that as a young healthy looking woman, they took your concerns seriously and responded appropriately.

My only suggestion at this point is to be sure to follow through with REGULAR checkups (at least annually) and to get checked out if you develop ANY new or more severe symptoms.

Remember the VR.com saying: "The Worse it gets, the Faster it gets Worse" which I believe was originated by Bob H (aka Tobagotwo). Several of us can attest to the validity of that warning.

Best wishes,

'AL Capshaw'
 
Mayo Clinic

Mayo Clinic

carista said:
Thank you all for all your advice and concerns. I just wanted to update everyone after having had my second opinion at Mayo Clinic. My cardiologist also recommended I have a stress test done so I could see where I'm at to be able to work out again which I did earlier today.

All I have to say is what a difference!! The difference between Abbott in Minneapolis and Mayo is huge (in my opinion). At Abbott it just seemed like no one gave me much information outside of what I asked. At Mayo, I left for home with so much information I didn't even know where to start. They gave me books, packets, video's...the works. The nurse knew I was there for a second opinion and wasn't sure yet if I would end up having the surgery there or not so she told me she wanted to make sure I had all that information incase I didn't. They did more thorough tests on me, explained all my numbers to me and overall I left Mayo feeling so much better about everything that I cried with relief when I left. I don't mean to talk bad about Abbott because I do know they are very good as well, even the cardiologist at Mayo said that. I just felt so much more taken care of and comfortable at Mayo.

I was also told by the surgeon at Mayo that if I chose to get pregnant right now I would be able to without much risk.
I don't have my medical records on me right now so I don't remember the exact numbers, but I do remember that Abbott had my aortic valve area measurement at 0.8cm sq and Mayo said it was 1.11, I believe. Mayo said everything is moderate. Abbott told me it was almost severe. They also told me to keep my heart rate under 140 and to do no more than 20 mins a day of vigorous exercise. Mayo just gave me the go ahead to do all the cardio I want as long as I kept my heart rate under 180 (which I just about got up to during my stress test and I really don't think that will be a problem) I still can't go back to bodybuilding like I was hoping, but hey...at least I can get back to cardio so I can shed the 15lbs I've gained since quitting smoking and quitting working out! Mayo also did explain to me why there was such a difference in opinion compared to Abbott and Mayo which also made me feel better.

All in all I feel much, much better about everything and it sounds like it will be awhile yet before I have surgery. The surgeon did tell me I will most likely have to have my ascending aorta replaced also which I suspected anyway.

Thank you all so much for your input and suggestions and just for listening. I always appreciate everyone's opinions and experiences to help give me different perspectives and to help keep me open minded. :)

Carista


Hi Carista, I just joined this group last night and I jumped on your message because I am going to be going to the Mayo Clinic for a second opinion too.
I can't find dates on the posts so I can't tell if yours was really recent or is an older post. Are you still awaiting surgery? Your numbers are very similar to mine and my cardiologist at MGH in Boston tells me I have a little longer before surgery but "within a couple of years." I am a runner but am too scared to run anymore so I just walk fast. I really don't have any symptoms except possible fatigue - but I walk 3 miles every AM, work 9-10 hours, and sometimes play tennis at night. I don't know. I do worry about the "sudden death" thing and I think I'm getting closer to electing to have the surgery now because I'm getting tired of thinking about it. I guess truthfully I do have fatigue and esp if I carry heavy stuff - like suitcases when travelling.

Which cardiologist did you see at Mayo? Did you also see a surgeon?

Well I hope you'll reply and I hope you are doing well. Thanks! brd
 
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