Everything You Say and Do WILL Be held Against You...

[BattleScars]

I got my medical records through email today. 348 pages long after printing them out! Just skimming through the pages I noticed so many things but the biggest thing that bothered me is EVERYTHING I have have said is written in my charts. And it gets worse. Many times over the nurses at the PD clinic would misquote me or write in things I said in a way to make me look bad without actually writing in what I really said. You've seen it in newspapers when stars get misquoted or the reporter leaves out the full sentence? That's exactly what they did to me hundreds of times. They would also outright lie and make up things as they went along. Of course I have no way to prove any of this.

There were times when my nurses were getting too personal and asking me questions I didn't feel comfortable answering about my personal life, my marriage, even my sex life! And when I refused to answer and told them it was personal they made it sound as if I wasn't complying. I know they need to know the basics of my home life but they were taking it way too far. What does any of my personal life have to do with my dialysis treatments? I was even shocked to see that they stated in my records the reason I was not being considered for a transplant was because I missed appointments and I wasn't compliant with PD. This is so untrue! I have been 100% compliant with PD. I missed my first appt with a transplant psychiatrist because two days earlier I was having surgery to have my PD catheter placed. They schedule these appointments months in advance and I tried to reschedule but they refused to allow me to. I couldn't even walk for a week because I had a hernia repaired that same surgery. They rescheduled it finally a month later but gave me a written warning. 3 months later I missed that appt because I overslept and I admit that was 100% on me. But my point is I did comply and I am human and things do come up. They did and said everything they could to make me look as bad as possible.

A few months ago I asked the dietitian if beer had a high amount of phosphorus in it. She wrote that I stated I was drinking every day! I can count on one hand the times I have had a drink this past year and I don't even get drunk anymore. I can't even handle alcohol like I used to. It's like everything I said was being held against me, misquoted, or exaggerated. I should have had a lawyer present with me! I did learn a lesson. It's important to watch what you say, especially if certain nurses have a history of distorting the things you say. You have a right to your privacy without having to feel bad about it. If they can't respect that then you need to find a new place to seek care. I am so angry. I wish I could report them but I don't know where to turn or what good it would even do at this point.

Has anyone else gone through their medical records and seen this kind of thing?

[jeannea]

That's so weird. I have not gotten my records. But during clinic they were so busy I don't know how they would have time to do that. My nurse had 50 PD patients to take care of. She barely had time for lunch. I think these are people with way too much time on their hands. I guess all you can do is be more careful. Or I would be tempted to look for a new clinic. Have you spoken to the doctor? Or the manager of the clinic? Are they aware of this? What do they say? You might as well find out. It can't make things worse.

No one ever asked about my sex life. They would ask me in general how are you doing. The docs would ask about fatigue and if I was functioning in daily life. I did have 20 years of seeing the head doc which helped. They knew me.  Your nurses sound like voyeurs.

I can't believe you printed out 348 pages.

[cariad]

I had a nurse ring me up about 4 years ago because this arrogant halfwit of a nephrologist had written on my records "Doesn't want to take transplant medication!" and "Has her own way of doing things!" (Exclamation points and all.) The nurse then proceeded to lecture me on how important taking medications after transplant was. I couldn't be polite any longer and interrupted her to say that I was post-transplant OVER 30 YEARS and that she (the nephrologist) did not accurately transcribe what I had said, which was that after all of these years, I need to find a doctor that respects that I have a way to manage my health that has worked for me and that I am not looking to change, and that I was trying to get in to a clinical trial that, if successful, would mean that I would not have to take meds any longer. This nephrologist aggressively told me that I would not get in to that trial and that I could not wait a year to get dialysis. One year (almost to the day) later, I got my kidney transplant in the very clinical trial I described to her, which was essentially pre-emptive.

After that phonecall I went back to that practice, saw the nephrologist's partner and told him how reckless that was of her to write these things on my records. His response was "Nothing bad has happened here." Well, sure, not to *you*. I also told the nurse that I could not believe how inaccurate my records were, showed her a bottle of iron supplements that the doctor had refused to believe came in 25mg capsules, and generally ranted about how combative this doctor was. Of course the nurse defended her and said I must have misunderstood because she is not that type of person. Whatever. I got in to the trial, brought my husband to one last appointment as a witness, told them what I was doing and did not even receive so much as a congratulations or, dare I say it, "gee, guess we totally missed the mark with you, huh!"

BattleScars, I would get away from these people as soon as humanly possible. Apply to a transplant program and let them ask you at the eval about anything they find unsettling about your records. Frankly, there is no way they will read 348 pages, but if issues of compliance come up, I would just tell them that there has been some miscommunication/misunderstandings between you and the clinic, and that they (the transplant centre) will find that you do indeed respect how important it is to adhere to a medication regimen. All they can do is say no, right? Someone will give you a chance but you have to go after it and show them how much you want it. I wish they didn't have all of these secret tests and traps, but they do. Work with it, that is a faster path to transplant than fighting a rotten, judgmental process.

[BattleScars]

I can't believe you printed out 348 pages.

My wife actually printed them out at work for me. She said it took a half an hour lol.

[LabRat]

Nothing surprises me about this, when my original MD retired in 2007.. I got all my medical records on CD from some records storage place. As I glanced through 30 years of stuff I was gobsmacked about some of the stuff that was written down and never uttered to me to my face.

I too got the non compliant label when I was an inpatient at MH for a week for clinical depression, all because I didn't want to take part in kindergarten like activities or do stuff that to me was a wee bit too feminine for my liking ( I'm a guy)

One doc figured I was this or that.. when I read it I'm like " up yours buddy!"   

[BattleScars]

Nothing surprises me about this, when my original MD retired in 2007.. I got all my medical records on CD from some records storage place. As I glanced through 30 years of stuff I was gobsmacked about some of the stuff that was written down and never uttered to me to my face.

I too got the non compliant label when I was an inpatient at MH for a week for clinical depression, all because I didn't want to take part in kindergarten like activities or do stuff that to me was a wee bit too feminine for my liking ( I'm a guy)

One doc figured I was this or that.. when I read it I'm like " up yours buddy!"   

It's a part time job just sifting through the 348 pages. I'm shocked by what I'm reading. Last night I was reading where I missed a PD appointment where I called in ahead of time because of a death in my family. They had the nerve to question me like I was lying!!! I had just found out my stepmom has died and my best friend's mom died that same week and she was also on dialysis and more of a mom to me than my own mom. She even told me just two months before that to call her and she would help me through the dialysis when I found out I was going to have to start soon. They questioned me because at my next appointment I didn't want to talk about it. That's my business!!! I don't have to share that with anyone, especially people I don't trust! I'm so angry at these clowns.

[kit78]

I haven't gone through mine but do know how they write what ever they feel.  Been through it many times.  I feel down the stairs once and in my records it said I feel on ice. HELLO........ big difference. I had on slippers and was rushing to get out the door and slid down them I went!  I love when I get to dialysis and they ask if everything is ok.  When I say ...NO...the Philippine lady says..." That's Nice"  excuse me... she never listens to what you say.  You have to repeat to her all the time. Otherwise she is a very nice lady, just doesn't listen. 
Not sure what to advise you other than to call them on it.  I do that at HD now. 

[Dman73]

Don't tell any of them anything you do not want to be documented.
What do you think they are doing with all that typing that they do on that keyboard when they put you on or take you off.
Remember, these people are not your friend no matter how friendly they seem. Ask them out one day and you will get the response that we are not allowed to get personal or date patients. Best of luck all...

[Wildrose]

So sorry that happened to you!
I'm afraid to know what my medical records say, I know I talk too much. 

[lmunchkin]

Thank God, John don't say much.  Hope my talking too much, is not held against him!!!  Wow!!!  The nerve....

lmunchkin