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Discussion Starter #1
I know this is a cat forum, but I figure it's worth a shot!
Anybody know a really, and I mean REALLY good pediatric cardiologist surgeon?
Mine has sent my records to Stanford, Mayo Clinic and Boston...all three (four if you include the hospital I go to anyway) were reluctant/refused to fix my clunky ticker. I realize I'm not my doctor's only patient, so he really can't spend time focusing on just my case... which is why I figure maybe anybody else would just happen to know more sources I can check out.
I go to University of Utah hospital, which is usually ranked high in cardiology stuff (most teaching hospitals are most up-to-date with new methods/technology).

The problem is that my heart has so many deformities, that they end up working together! Yes, my heart works, but it's weak and doesn't work properly. My doctor said that unless it's done very carefully, if they try to fix one deformity, that will make it so another one doesn't work, as they're all tied together all weird-like. The plan, for now, is to just wait until my heart totally konks out and get a transplant.
So while I'm not gonna hold my breath about getting it fixed, couldn't hurt to at least see if it's possible somehow. Besides, while having a "good" heart would be nice, I really don't look forward to all the anti-rejection meds and restrictions of lifestyle associated with them. Not that this should happen for another 10+ years or so, though.

Yes, I can still get out and do things, but it's becoming increasingly difficult. I can't even go up one flight of a dozen stairs now, without feeling like my chest is going to explode, and even lugging in a few bags of groceries gets me all tuckered out, and same with vacuuming - I can do about half a room, before I stop and need a nap! Plus I have random arrhythmias that feel like heart attacks (sore left arm, headache, cold sweats, dizzy, etc.)... and they don't want to try to fix that either, since I've had so many other arrhythmia fixes that they don't want to put too much scar tissue on my heart and make it even worse.
Nothing right now is life threatening, just inconvenient/uncomfortable/annoying. And I'm not trying to complain (like I said, I can still go out and do stuff...if I pace myself slowly), just stating the situation.

So I figure no harm in hoping... won't break my heart (it already is! HA HA) if nothing turns out from this.
 

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Seriously, I'm sorry to hear that you're having difficulties. I know how it is with heart things. Scary.

I'm puzzled as to why no one wants to help you out though.

Hope you get the treatment you need before it becomes anything like a real problem....
 

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Discussion Starter #6
Don't feel bad, guys! I just figured it was worth a shot to ask around.

It's not that they don't WANT to help, but I'm such a complicated case that they want to be extremely careful of not end up making it worse. Last estimate, with the knowledge/skills of the petitioned doctors was a 60% chance that I'd either die from "tinkering" or end up worse off... I would really like to wait until I can get more of a 30% or even 40% chance of that.

It would really just be more convenience than anything. I don't have anything life-threatening right now, so I guess I should just learn to be patient and grateful for what I DO have.
 

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Discussion Starter #8 (Edited)
It does. I'm small (only 80 lbs), for one thing. 90% of people who meet me for the first time think I'm a teenager (though a few people have guessed early 20s...they're still 10 years off!)
For things that go in/on my body, I need pediatric equipment most of the time. Even blood pressure cuffs don't work, unless they get the small size.

And I was born with all this junk, so I was seeing a pediatric cardiologist until I was 21. I guess the children's hospital likes to totally cut you off then (or even at 2 1. So now I go to the "Adult Congenital" clinic, and they consult with pediatricians a lot.
In fact, the only reason I'm even seeing an "adult" doctor right now, is the doctor who's been working with me since I was born (in fact, she was in my mother's college Sorority!) got transferred to a hospital that doesn't take my insurance. She did come visit me when I had my stroke, though! ^_^
 

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Ah ok, yeah I could see why having someone used to working on smaller bodies would be better.

I kinda had the opposite problem. I tore the cartilage in my knee when I was 12. I didn't realize this until a year later when it still hurt like heck. Well.. the joint specialist walked into the room looked from me to my mom and said "Did Rae step out to the bathroom or something?" He didn't think I was 13 because I was so tall. I'm now 6'1". I think I could have any flesh if I weight 80lbs. I was a skeleton at 155lbs.
 

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My surgeon does heart work on tiny babies, he's an ex professional rugby player with HUGE hands. How he does these insanely difficult things on such small hearts is astonishing.

Yours sounds way more complicated than my tinkering though.
 

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US News and World Reports does an annual survey of the best hospitals in the country. I looked it up for Peds. Cardiology and here is their listing:
U.S. News Best Children's Hospitals: Heart & Heart Surgery

They are saying Boston's Childrens. I have also heard lots of good things abotu Texas Children's (ranked #3). Maybe you could contact the hospitals listed to see if they could help you.

I am sorry that you have to deal with all of this. My next door neighbor has a big, floopy heart and went last year to be evaluated for a heart transplant. They were able to put in a dual chamber pacer that has increased her ejection fraction from 24 to 32%. I see her frustrations and can only imagine yours.
 

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Discussion Starter #12
Thanks, Leazie!
LOL "Floopy"... I like that word!
My EF is about 60, so not quite yet a candidate for transplant...but I'm getting there, slowly but surely ;)
 
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