I don't know if any of your remember the headaches that I had last spring as I was trying to get old records put together in order to qualify for the trial. I went through many, many headaches over that. Finally, I was accepted into the Prove 3 trial by Mayo in May. Prior to that, I had contacts w/Shands, inquiring with them about a trial & actually had spoken w/one of the trial nurses on the phone. She had requested that I send them my records-which after practically having a nervous breakdown trying to get them together-I got a packet together& Fed-X them up there. I KNOW that they received them because I had a signed receipt back from the shipper. I never heard anything back from them at all. Today, out of curiousity & wanting to see if there's anything down the pike for me there, I called there. I talked to the appropriate guy after getting transferred 3 times. He went & checked&my RECORDS HAVE BEEN LOST!!! I am so tired of this happening, you have no idea. Now, if I'm going to get all these records together again, it's going to require a big effort on my part & I'm really not sure that I want to expend it. I mean, what's the point? Do they really have any intention on following up w/me? Anyway, it's not as simple as just contacting my current doctor because I've been to several different places. The first doctor that treated me-I left that practice on bad terms because the Dr. was a jerk&I fired him&besides that-it's been over 10 years&he would not keep my records that long. The 2nd Dr. has moved out of the area&the records he left behind are not complete-I've already gone&picked them up-those are over 7 yrs old&some of them aren't available either. The 3rd doctor retired&sold his practice to a new Dr., who owns my old records. When I requested them, what I received from her-is-once again-not adequate documentation-as far as the type of notes the doctor kept.I have good records from current doctor, but I've only treated with Infergen w/him&all the records from the past treatments don't document a lot of what I needed. I have practically no records from Mayo because of the blinding of the trial. What I've managed to keep in my own private stash is things like lab reports, copies of biopsies&ultrasounds-but the Dr.'s notes from the past Dr.'s are lousy. Anyway-if I can offer any advice to you all-check on your records-regularly. Sorry, don't mean to be whining. Susan
I can't read all of this but I got the gist of it. This is why you never, ever send paperwork unless you've made copies first. If you fax these things, you don't have these problems. I'll say it one more time, make copies of all tests and anything of importance.
I'm so sorry the medical office lost your records. I have copies of all my labs and before that, my bx and everything. I even had extra records when I went to see Dr. Gish that he didn't have and he asked for copies for my file so his assistant copied them. I NEVER let anyone have my only copy. I carry them in a 8 1/2 x 11 " plastic clear envelope. I always put the latest one on top. I have some information from previous doctors and my recent and previous ultrasounds, and all my thyroid stuff. I have a fax but I only know how to send things, not receive. I changed doctors so many times I have to have copies.
I hope it isn't too difficult to get them again. Best wishes on getting them again.
I have copies of 98% of my labs and, of my biopsy reports (all 4 of them) and my ultrasounds. But, the notes that the doctors dictated (which I also have copies of), don't support what the labs are showing and what decisions that made based on those labs. It says like things like, "Pt came in today for follow-up Hep C-medications remain the same, will repeat labs and see again in 2 mon." and then, lists my meds below : Peg or Riba or Infergen (whatever I was on at that time). The study sites were wanting to know viral loads and med changes in relationship to those viral loads and Dr.'s comments about non-clearance and things of that particular nature. 3 of these doctors did not take these type of detailed notes that these study site doctors are looking for. So it's like, even the records that I have, aren't good enough. As far as a fax machine, I don't own a fax. Any time I have to fax something, I have to take it out to one of those outside fax services which costs me money, too. When you're sending out a big stack of paperwork, it's cheaper to Fed-Exp or UPS it. And yes, I do keep my originals. It's just that my originals have been shuffled through so many times trying to put together some order to them for bringing out to some place to make a copy (because I don't own a copy machine either), that I'm getting thoroughly frustrated w/keeping it all together. I really wish I could stay focused and force myself to pay attention and sit down long enough to put this stuff in order. At one time, I did have an organized notebook, but after 10 years of records, it got too full and I've never taken the time to sit down and thin it out. I guess I'm afraid to get rid of any records I might need later.
I understand what you mean. My treatment doctor from 14 years ago, admitted if he had them, they would be in an attic somewhere and its been too long anyway to go by that. Need to start over with another doctor. I was so mad.. So thats what I did. His bedside manner sucked anyway. He took out my gallbladder. Thats when I found out about the HepC, after the proceedure, was still having pains in same area. I started treatment then.
When you go and do it and get them all in order again - make two complete sets. That way you have one already to go as a backup and all you have to do is feed it directly into the copier and let it run. You could make a couple of copies.
I wish you were close to me I have all that junk and I'd be glad to do it for you (i've been off tx longer and now that I think I'm totally SVR for real I seem to have a tiny bit of spunk again!)
I would definitely make a couple copies once they are in order and done one time by hand...then let the copier just do all the work for you! You get what I mean?
I'm sorry - I don't know how they "loose" things as important as this either.
After my car accident I went to one doctor who had five different degrees...he was a physiatrist and so he did a couple of different things for me (ie: neurologist, ortho guy etc). I went to him for five years and then he died. Of course...I had stopped going to him a few months before and didn't know. When I got rear ended in yet another accident and needed my records they were ALL gone - like worth losing five doctors worth at one time. I thought I'd have a breakdown. I never did get them, I had to start all over from zero it sucked SO MUCH!
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