Hi folks--
The more appointments I go to, and the bigger medical facilities I go to, the more screw ups seem to come up. Then I read all the weird stuff that's been done to and said to folks on the forum by doctors and medical facilities--I am learning I have to be my own best advocate and case manager and not leave it to the "experts".
After arriving at 3 of 4 of my last appointments and finding they didn't have the previous records they were supposed to, I've decided that I need to have a complete file of ALL of my medical records and reports, and keep it current (get copies of everything every time I go in) and I have started it in one of those carrying file boxes. I plan to hand carry it to every single appointment I go to from now on, and not care if I look "dumb" because I want to be able to fish out those test results if I need to and hand them to the doctor and say, here, take your time, but READ it...
I'm also realizing that I can't take anything for granted when it comes to one person communicating with another person, but I need to doublecheck. I've been waiting for Rochester to respond to my sending records/info/cover letter by fax two weeks ago (as I was told by phone would be fine, to have doctor verify that indeed I should be making an appointment, how long, and with him)--I even checked a few days after sending and left a message for the person who said to fax them to her. She emailed me the other day and told me the pages I faxed showed up from "somewhere" on her desk 12 days after I sent them! She also said she was never given my phone message. And I was trying not to bug her... To their credit, when she got the fax pages she paged the doctor immediately and not only got me a really fast response by the next morning, but had me talk with him at length on the phone in person (and she said I would never be "bugging her" by checking in; it was someone else who gave me that sense.) So there I've learned to just stay being the squeaking wheel and keep at people....
Another one from this month: I wrote my University cardiologist after he referred me to the EP at same clinic; when I went to EP I realized after the visit when I tried to make sense of it that she didn't know who my cardiologist was, or that he was at the same clinic, and she didn't have in front of her the results of the $2500 worth of tests I'd just had done at her clinic. To his credit, after he read my letter, my cardiologist called me and said I was right, it was a screw up, he had since talked to her in person, told me what they agreed on as the medical recommendation, and that I could always reach him by email--but it took me about a week to figure out what felt so weird about the appointment with the EP...and figure out that I needed to write him and clarify that they agreed on their recommendation. (First hint was on the highway out of town after whole day getting to that appointment, I remember saying to my husband, "WHY did we just go there??")
The point is I can see that I need to be my own case manager, and be very proactive about it. Yet I'm learning as I go, so each time I encounter one foul up and kind of figure it out, it is a different one next time. Aside from winging it and trying to recognize and juggle whatever they throw at us (and throw it back when appropriate) any strategies out there?
So, subjects include keeping track of records, and keeping after people about communicating with each other even when I feel they are the "experts". Also, reading the forum I read all kinds of weird stuff folks get told by ER doctors and nurses (was it Andrew's mom who said someone asked with concern, "do you know he has a murmur?" EGAD!) Any thoughts on educating my local, small town ER either ahead of time on a just-in-case basis, or having info to take with me or leave in my local hospital's file? My cardiologist is a couple hours' trip away, if I have to go to the ER for something HCM related or for something else it would be the ER staff and perhaps my local PCP who'd be there. Cardiologist would be contacted by phone, so maybe I should have the cardiologist's contact info in my hospital file too? I plan to ask my PCP to what degree she would be willing to educate herself about my HCM and stay in touch with my cardiologists, both at the University and also now I'm going to go for eval at Mayo Rochester.
Burt, and some of you others--I'm finding it so hard to keep on top of one medical condition; I don't know how you begin to keep track of all your multiple diagnoses and how they all must interact.
Thanks everyone, you are all great,
Lisa Inman
The more appointments I go to, and the bigger medical facilities I go to, the more screw ups seem to come up. Then I read all the weird stuff that's been done to and said to folks on the forum by doctors and medical facilities--I am learning I have to be my own best advocate and case manager and not leave it to the "experts".
After arriving at 3 of 4 of my last appointments and finding they didn't have the previous records they were supposed to, I've decided that I need to have a complete file of ALL of my medical records and reports, and keep it current (get copies of everything every time I go in) and I have started it in one of those carrying file boxes. I plan to hand carry it to every single appointment I go to from now on, and not care if I look "dumb" because I want to be able to fish out those test results if I need to and hand them to the doctor and say, here, take your time, but READ it...
I'm also realizing that I can't take anything for granted when it comes to one person communicating with another person, but I need to doublecheck. I've been waiting for Rochester to respond to my sending records/info/cover letter by fax two weeks ago (as I was told by phone would be fine, to have doctor verify that indeed I should be making an appointment, how long, and with him)--I even checked a few days after sending and left a message for the person who said to fax them to her. She emailed me the other day and told me the pages I faxed showed up from "somewhere" on her desk 12 days after I sent them! She also said she was never given my phone message. And I was trying not to bug her... To their credit, when she got the fax pages she paged the doctor immediately and not only got me a really fast response by the next morning, but had me talk with him at length on the phone in person (and she said I would never be "bugging her" by checking in; it was someone else who gave me that sense.) So there I've learned to just stay being the squeaking wheel and keep at people....
Another one from this month: I wrote my University cardiologist after he referred me to the EP at same clinic; when I went to EP I realized after the visit when I tried to make sense of it that she didn't know who my cardiologist was, or that he was at the same clinic, and she didn't have in front of her the results of the $2500 worth of tests I'd just had done at her clinic. To his credit, after he read my letter, my cardiologist called me and said I was right, it was a screw up, he had since talked to her in person, told me what they agreed on as the medical recommendation, and that I could always reach him by email--but it took me about a week to figure out what felt so weird about the appointment with the EP...and figure out that I needed to write him and clarify that they agreed on their recommendation. (First hint was on the highway out of town after whole day getting to that appointment, I remember saying to my husband, "WHY did we just go there??")
The point is I can see that I need to be my own case manager, and be very proactive about it. Yet I'm learning as I go, so each time I encounter one foul up and kind of figure it out, it is a different one next time. Aside from winging it and trying to recognize and juggle whatever they throw at us (and throw it back when appropriate) any strategies out there?
So, subjects include keeping track of records, and keeping after people about communicating with each other even when I feel they are the "experts". Also, reading the forum I read all kinds of weird stuff folks get told by ER doctors and nurses (was it Andrew's mom who said someone asked with concern, "do you know he has a murmur?" EGAD!) Any thoughts on educating my local, small town ER either ahead of time on a just-in-case basis, or having info to take with me or leave in my local hospital's file? My cardiologist is a couple hours' trip away, if I have to go to the ER for something HCM related or for something else it would be the ER staff and perhaps my local PCP who'd be there. Cardiologist would be contacted by phone, so maybe I should have the cardiologist's contact info in my hospital file too? I plan to ask my PCP to what degree she would be willing to educate herself about my HCM and stay in touch with my cardiologists, both at the University and also now I'm going to go for eval at Mayo Rochester.
Burt, and some of you others--I'm finding it so hard to keep on top of one medical condition; I don't know how you begin to keep track of all your multiple diagnoses and how they all must interact.
Thanks everyone, you are all great,
Lisa Inman
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