Hello

[Scott Stanley]

Hello everybody, the first thing I would like to do is think Lisa and crew for doing a wonderful job with this years meeting. My wife and I learned and met alot of nice people.

Now about me, I am a 36 year old with nonobstructive restrictive HCM and am in heart failure so the diet sucks. I was diagnosed in Feb. with failure and March with HCM. Seven years ago I was diagnosed with SVT and AF and a few other fun things and went through four heart ablations and recieved a pacemaker, and to top it all off two years ago found out I have crystalization in my lungs along with Ondine's Curse. Oh well if your going to be abnormal you better do it right.

I work full time in sales for a major Turf and Ornamentals chemical company that really helps and understands what I am going through. I have a wonderful wife, who has droped everthing and been my rock and two wonderful boys that are two and four.

The one question I have today is has anyone out their had the Maze Procedure or know of anyone who has. This was discussed to me at the meeting and would like to find if it works. The TEE's and waiting to try to get into rythm is starting to take its toll on my body and mind.

[Sarah]

Dear Scott

I'm sorry you have had such a hard time of it. After having so many procedures already, please see an HCM specialist (I would say Cleveland or Mayo) to see if you are a candidate for a maze.

Not to rain on your parade, but after seven years of afib, getting into sinus may not happen. My brother has been in afib for ten years (he is 30), my aunt for 30 (she is 50) and myself for two years (I'm 35). You can live in afib. Not the greatest way to be, but there is only so much your heart can take in the way of proceudures, too.

The guys in KC are pretty good, but a maze is heavy duty stuff and should only be done at one of the top centers that do them on a regular basis. They may not even agree to do a maze locally as they are not common.

BTW, I have family in Overland Park! My cousin was recently ablated for afib but it didn't take. I suggested he go to Cleveland but he didn't.

take care,

S

[Tigger1]

Welcome Scott,

Sorry to hear about all your problems, but I had a Myectomy in Cleveland 3 weeks ago and I can't say enough goods things about the place. Keep researching your problem and this is a great place to start.

Best of luck and you will be in everybody's prayers...

Patrick Ekardt
(Tigger1)

[Reenie]

Hi Scott! Great to see you on the board. Good luck with getting everything in order. You and Cheri have a lot of info to think over after the meeting. I don't know anything about the maze procedure, but agree with Sarah that it's something that should be done at one of the specialty centers.

Reenie

[felixdacat]

You know Scott, you don't look so bad for someone with so much stuff wrong with him.
Welcome to the boards. I hope you get some answers.
In the meantime, lets work on getting you up to an HCM center.
It was nice to meet you. The best of luck.

[cynthia]

well, welcome Scott! It's me, Cynthia, who sat next to you and Cheri at Saturday's dinner. I am so glad you joined in! I know that you guys mentioned that you do go to the Mayo Clinic (Cheri said like a 5 hour drive??). You and your wife are a wonderful couple. I would suggest obviously discussing it in detail with your doctor and maybe another doctor to see if it's the right form of treatment for you. I wish you all the best...I'll be "chatting" with you soon :wink: p.s say hi to Cheri