Medical Records Question

[BattleScars]

I finally had it with my PD dialysis unit today and I've made the decision to move on. Two things happened today. I called in about my recent labs and they put me on the phone with the dietitian instead of one of the nurses. I can't stand this lady. She always treats me like a 5 year old and talks down to me about what I eat. I can't even count how many times she asks me if I'm eating yogurt and I haven't even eaten a yogurt in over a year. I get so sick of telling her, "No, I don't even eat yogurt..." Many healthy foods have a lot of phosphorus but it was my meds that were causing most of my high numbers. Regardless, I was able to get my phosphorus down to 4.7 from 6.8. Even still she's criticizing me today for taking 2 phosflows (sp?) and not just 1 and 2 renegels with each meal. Their concern was my calcium spiked 2 months ago but we figured it out and the cause was I was taking Tums up to 4 times a day for frequent heartburn. I'm now on the purple pill and no heartburn and my calcium level is in line at 10.0. I finally get my phosphorus under control and now she wants to screw with my meds again?!?!. This is beyond frustrating.

She finally put me on the phone with a nurse and I was asking about getting an iron transfusion because my hemoglobin is low as well as my iron. She started scolding me saying I'm not complying and missed several appointments for the iron injections. This is an outright lie! The day I was supposed to go in I had a terrible case of the flu and couldn't even get out of bed so I called in before my appointment and only got voicemail. I left a message and contact info and nobody bothered to get back to me. They also schedule these appointments so far out (often months ahead) that anything can come up, that's life. But I didn't just not call, and fail to show. I asked her why the keep telling me one thing about my meds and then scolding me for taking them wrong and she said in the most condescending tone that they could write everything out for me. I'm not a child. I'm not dumb either. I do pretty well following instructions. I hate being treated with this disrespect.

The worst part of it all is my wife talked to a transplant surgeon recently about my case and he told her I was being labeled as non compliant by not taking my meds as prescribed! This isn't true. I don't think it's right that I'm getting this label over their  lack of communication. I have to change clinics and doctors in my own best interest.

Here's my only worry. I don't want their negative notes to follow me. I don't think I can just walk in to a new clinic without my patient records but aren't they private for a reason? Why should I have to share anything beyond my most recent labs? Can I even choose what can follow me? I just want a fresh start and don't think I will get that chance if their labels follow me. I'll be prejudged before I even start. Will any HIPPA laws protect me? Anyone else been through this?

[MaryD]

Have you tried taking notes whenever you have a conversation with your PD unit personnel?  Make a note of who you spoke to, what was said, the date, whether you left a message - anything you can think of.  When you have finished your conversation, briefly repeat back the instructions you have received.

Then you will have ammunition when someone else countermands previous instructions.  It probably wouldn't hurt if you casually let them know that you are taking notes, and certainly don't hesitate to whip out your notebook when you're in the clinic to update your notes in front of them.

[BattleScars]

That's good advice and I think in the future I'm going to do that. As for this clinic I think it's too late and MGH doesn't seem to take patient care seriously so even if I could prove someone said something they say they didn't say I don't think anyone would listen or they would still deny it.

[jbeany]

Maybe request the copy of the medical record directly - instead of requesting that they be sent to the new place?  Then you get to hand carry them, and see exactly what they wrote - and provide only what you want to share.

[Chris]

In my case before switching units, my first center charged me around $120 for a copy of my medical records. So be aware they may try to charge you. It is part of the HIPPA law that allows you to have access to your medical records, I remember that part from one seminar I went to.

[BattleScars]

Maybe request the copy of the medical record directly - instead of requesting that they be sent to the new place?  Then you get to hand carry them, and see exactly what they wrote - and provide only what you want to share.

That's a great idea. Depending on what they charge me at least I would be in control of what my new doctors see. My PCP finally agreed that I need to leave MGH because they aren't being fair to me. I find it interesting that he admits this now just as he's done with his residency and moving back home. Maybe he couldn't admit it before? Either way now that he sees it too I know it wasn't just me the entire time even though the nurses and renal team kept making me feel like it was my fault.