[Off to Cleveland]

Author: Edlyn (---.tstonramp.com)

Date: 10-30-02 01:51

Hello All:

Just wanted all to know that I am finally on my way tomorrow to see Dr. Lever at the Cleveland Clinic on Oct 31st ( Funny thing, I always had a special affinity for Halloween in my heart.........). I can't begin to express my frustration for the cardiologist who has been most obstructionist (pun intended) in trying to get my records sent to Dr. Lever. The latest is that he didn't send my exercise echo (with the 196mm Hg. gradient) as he didn't think it was very important!!! This is the same guy who said my symptoms of dyspnea, chest pain and fatigue had nothing to do with IHSS (HCOM) since my 1.7 septum wasn't large enough....... (sigh) I agree with what is repeated here over and over - get to a specialist! I'll report back how it all ends up and when I might once again begin to breathe normally again!

Excited, Nervous and just a tad Scared in Los Angeles,

Edlyn

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[Re: Off to Cleveland]

Author: Sarah B.-Board Moderator (---.client.attbi.com)

Date: 10-30-02 02:03

Dear Edlyn,

Good luck, best wishes, travel safe, have a good time, take care of yourself, get enough sleep, let us know you got there ok and when you get ok, and how it went and don't forget to bring a warm coat --it gets COLD over here!!! *grin*

take care,

Sarah

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[Re: Off to Cleveland]

Author: Karla (---.proxy.aol.com)

Date: 10-30-02 07:50

Dear Edlyn,

I'll be anxiously watching the boards to hear how your visit to Cleveland goes. Hubby is headed there November 13th.

Yep, take a warm coat and travel safe!

All the best -

Karla

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[Re: Off to Cleveland]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 10-30-02 08:47

Good luck and safe travels to you!

DRESS WARM!! It is looking like snow here in NJ and Cleveland is normally colder than here.

Let us know how you make out and send my regards to the Cleveland crew!

Lisa

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[Re: Off to Cleveland]

Author: Edlyn (---.rasserver.net)

Date: 11-02-02 15:58

Hello from snow furries Cleveland:

Yep, got here safe and sound even though I ruptured a disc in my back in all the preparation of getting here. They did an MRI on me last night and I have a nice herniation of about 10mm! Anyways, Dr. Lever and the clinic staff are even better than I thought they were going to be. What a waste of time all previous tests and exams were. As it turns out my mitral valve is in really bad shape and I have severe regurgitation. It was so clear on the echo, I can't understand how my cardio missed it. I guess I didn't look so good to Dr. Lever yesterday as he hospitalized me right away. I am scheduled for catheterization (angiogram) this Monday and open heart surgery (valve surgery with myectomy) either on Tuesday or Wednesday. Dr. Lever wants Dr. Lytle as the surgeon with the game plan to try to repair it first but Ithere are strongs odds of having to have it replaced . I don't mind that except that I couldn't return to the active sports that I haven't been so active with in recent years, since artifical valves require life-time Coumadineto which doesn't mix with bumps and scrapes. Of course, trading skiing for knitting can be just as exciting, except Dr. Lever (ever the realist) admonished against "sharp needles" (sigh.....).

There is no doubt in my mind that this is THE place to go for HCM and HOCM as Dr. Lever's knowledge and expertise is light years ahead of others (of course it certainly doesn't hurt that the man is brilliant). I will be here for at least another week, if anyone from the board comes here during that time, come say hello (I am admitted under my full name: Edlyn Burk-Soorani) I'd love to meet fellow club members!

All the best,

Edlyn

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[Re: Off to Cleveland]

Author: Sarah B. -Board Moderator (---.client.attbi.com)

Date: 11-02-02 19:49

Dear Edlyn,

Hang in there! Rest easy and have a good surgery --we are all pulling for you.

all the best,

Sarah

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[Re: Off to Cleveland]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 11-03-02 16:07

Edlyn,

you're in great hands at Cleveland, I know that will take very good care of you. If you need anything during you're standing or after pleased not hesitate to call us. Give my regards to the Cleveland crew,

Lisa