First Echo post AVR/ Lack of communication.

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On the 'what do you say when asked', all of the replies to that above are true, and excellent. If any of my Docs gave me any hassle about such a request, I would be inclined to (depending on the Doctor's receptivity to the real story or just a bland one) either say 'you never know when it might come in handy, such as if I ever had to be treated somewhere while traveling', stating that you like to have such data with you when you do. Or, you could just say you enjoy studying your health records and seeing any trends that emerge over time. As others have mentioned, this is supposed to be your right, to have that info.
 
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Thank you. I especially like the 'might come in handy /travel' response. My doctors all know we travel. That's the response I'll use if again asked why I want the records.


It's odd because the doctor that asked me that really isn't arrogant and is clear and patient in answering all my questions. That was why it particularly struck me that he asked.
 
The Release Form used by my Cardiology Group's Records Department has several boxes for reasons.
One of those is "Personal". Works for me.

My Cardiologist knows that I maintain a Spread Sheet with lists ALL of the Parameters (and comments) from Each Echo.
He (and I) both look at my spread sheet to see trends since that is MUCH easier than leafing through MANY past reports and hunting for the appropriate numbers/ comments.

'AL Capshaw'
 
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Thank you. I especially like the 'might come in handy /travel' response. My doctors all know we travel. That's the response I'll use if again asked why I want the records.


It's odd because the doctor that asked me that really isn't arrogant and is clear and patient in answering all my questions. That was why it particularly struck me that he asked.

Speaking of traveling, I don't know if this interests you since you do travel alot and I KEEP meaning to make a post about it, but Since Justin has alot of records , not to mention doctors. I try to keep a short set of the most recent info for ERs. It was easier when he was younger and usually with one of his parents, but since he snowboards or goes out of town for days at a time in the summer working concerts, I was trying to decide the best way for an ER to get his records ect incase of an ER. So I was talking to one of the staff at his adult CHD card and asked IF we got a flash drive would they download all his records and anything THEY would want to see if someone came to them in an Emergency. They said they could even load his test images on it if we wanted (we did, I haven't got it back yet so haven't looked at them all). Medic Alert had a flash drive program for a while (where I got the idea) but discontinued it because they couldn't keep up with the updates ect, SO I tried to figure out the best way to make it so that anyone would find it in the case of an emergency,and Know to look at it for the records, especially since he usually has a couple of them for school ect, before we got one. I decided to buy a nicer flash drive Key ring at "things remembered" that they engrave and had his name put on the front that you see easily and smaller on the back just "medical". Then we had Medic Alert put something about his medical records are on the flash on his key ring marked "medical" in his medical info on file, so if someone has to call them that will be one of the first things they find out.
Since Justin got his pacemaker out and isn't on any meds, he doesn't wear his medic alert much, but always has his keys in his pockets. So I talked to Medic Alert and we came up with getting one of the dog tag emblems they have and he was willing to put that on his key ring. We know they won't see it as easily as they would a necklace or bracelet, but since they always check pockets for wallets and ID in Emergencies, we thought it was a compromise that would work.
I dont know if all offices are as willing to take the time and effort to download all your records (and we did tell our not to rush whenever she can get it done is fine) but I think this would be a really good thing for people with a few medical issues and several kinds of doctors. Not only would everything be available in the case of ERs but when you go to a new doctor or different kind of specialist you have everything with you. When we were discussing what should be on it, beside saying anything that would be good in an ER, I said any records you would like to have if you got a new patient. After the intail work of getting everything on it, They will update it after his appts, or we can.
 
Hi James. Just to add my 2 cents. My cardio didn't really even want an echo until I was a year post-op, but I started having wild palpitations when she was out of town at about 8 wks out and the "electrical specialist" I got turned over to wanted an echo. Nothing was wrong, of course. Just heart doing the happy dance. Now, you do make me wonder whether there was an echo taken in the hospital just post surgery -- I suppose there must have been?? or might have been! I don't have a copy of that. But I do have a copy of all my other echos. All I do is ask my cardio's records office to forward it to me. Very simple. "hello, records, please" ..... bad music..... "oh hello, this is so and so. I would like you to mail me a copy of the ehco I had there on March 1st with Dr. Wonderful. Yes, that is the right address. thank you very much." Done!

As far as getting everyone on the same page; you might have to organize that. I would think that talking to the PA's (Physician's assistant) or the specific doctor's nurse would remedy all that. Just honestly tell them that you want a loop formed between all the concerned doctors and then that YOU want to be part of that loop!! They aren't going to ignore you. But they aren't going to invite you in, either. I imagine that all you need to do is voice your interest (or insistence) and you'll start getting better information.

It is so easy to worry. Go ahead, if you must, but chances are everything is just super perfect with you!

Keep us posted, though. Best wishes!

Marguerite
 

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