Another hosp screw up !!!!!!!

[Debbie C]

Well there are a couple issues I have going on the 1,I can hopefully fix. I went and had an endoscopy done last week and since then I have been getting sweaty and then chilled liked the flu but no temp. and my stomach is killing me. I told the dr. that did it I prescribed me pills for nausea ( which my ins won't cover AND I'm not nauseas and told me get over the counter Mylanta to coat my stomach. WTH...I felt better before I went in. BUT here's the real screw up and I don't know when it happened. You know when you go to the er they always ask your history. Well I told them about my wegeners and they spelt it wrong ( wegners ) and today I went and got the results of my bloodwork I had done yesterday and was going over things on the comp that's in MYCHART from the hosp. I happened to google what was written next to wegners. ...congential Syphilitic Osteochondritis...............SYPHILIS. So instead of them thinking I have an auto immune disease, they think I have syphilis !!!!!!!!!!!!!!!!!! WTH.........You know I will be on the phone first thing Monday morn. Just to let you all to know to be careful when telling drs. and the worst thing is is that I usually spell it for them.:mad1:

[Pete]

This is frustrating and funny together (hope you're seeing the humor here). Hope you get them straightened out pronto.

[Debbie C]

The thing that really makes me mad is all the people ( drs,nurses, anyone with access to MYCHART can see that ) No wonder they are always pushing antibiotics on me !!! Now on top of everything else I think I have a kidney infection. Its been a hell of a week

[Pete]

Once everything gets straightened out, won't they correct MyChart? Sure hope so. Hope you get to feeling better soon.

[Alysia]

Thanks God you found the mistake. Shame on them. I suggest you to write a letter not only fixing them on the phone. Only Phone call might be dismissed or create more misunderstanding.

Are you feeling better with the issues that brought you to the ER ?

[Dirty Don]

Go get'em Debbie! They deserve your wrath!!!

[Debbie C]

Don't worry about that Don....they will get my wrath !!

Alysia, I found the mistake by looking at my reports on the computer but no actually I was at the e.r all afternoon. I had an endoscopy last week and ever since then I have been having bad stomach pain that kept getting worse and last night my back was hurting by my kidneys and I am so dizzy but again they found nothing wrong. They did an xray and blood and urine. They said I may have gastritis or an ulcer so I got a script for Carafate. At least I didn't get more antibiotics for my syphilis !!!

[annekat]

Oh, man, Deb, that would piss me off royally... I have had transcripts of reports say really weird things because of voice recognition "technology", machines that record someone's report and get it wrong... I've seen some pretty humorous ones but nothing that would make a difference in my treatment. This sounds more like someone really misinterpreted something based on little knowledge of what you have and what is going on. I would sure be as anxious as you are to get it cleared up! Ridiculous!

And sorry about your ER episode, stomach problems and all.... I hope that is a temporary thing.

[Alysia]

Get well soon, Deb. If it will continue please check more about it. Also try to change your nutrition.

[Jaha]

Deb, I am so sorry you are having such bad stomach issues, I hope that gets cleared up soon. That is total ridiculous, that you have to do follow up on everything, when you come in contact with the healthcare system. Did you have your endo at CC? I had two there and still have to change Doc's up there to maybe get some resolve. I you can get them to change your chart and that you feel well soon.

[marta]

You said "no wonder they're always pushing antibiotics on you" - how long has that mistake been living on your chart?
I know from my days of Forensic Anthropology at uni, that syphilis also causes lesions and perforations throughout the body. I wonder if they've been looking at the granuloma damage and activity and thinking they're lesions from syphilis. What a bunch of dolts. You go straighten them up - and look at it as an opportunity to educate some people who were probably hung over and not paying attention in school Wegener's day (ha ha - if we only had a Wegener's day in school, how much better would so many of us be.)

Take care of yourself, and sorry to hear about the tummy troubles - post endoscopy.
My new pulmi wanted to do a bronchoscopy and I talked him out of it (on our first visit ever) because the risk-benefit didn't weigh out for me in my mind - especially before an RTX infusion. He was very respectful with my assessment and we didn't do it. I am of the mind that I want to do as little as possible in the realm of 'procedures' as the rate of iatrogenic complications is absurd and nobody is ever ever held accountable when it happens. So I stay the heck away unless I know it will save my butt in some epic way.

Take care, and heal fast. Would probiotics help (if it's bacterial in any way, probiotics might bring the balance back to the biome... just a thought - and they can't hurt.)

[Debbie C]

Jana, no I had my endoscopy done here in town..now he wants me have at ct scan of my stomach...UGH !!! I will be glowing in the dark soon from all the radiation ! I go back up to CC in Sept ( I think ) to see my rheumy. Hope you are feeling better

Marta, I just had to go back into the records on the computer of "MYCHART" and the mistake was entered back in 2011 by a resident dr. at the hosps. clinic., who is no longer there. So I called the clinic and they said I would have to come down there to have it taken off,so I said I would be right down if that's what it takes, she said "no, I would have to my an apt to see a dr. I told them I was not going to pay for an appt. So she put me on hold and asked the dr on duty and he said no. Soooo I told her she better talk to someone in authority to do it because Monday morn. I am going to call an atty. about deformation of character and sue them. I got a call back and she said she will take to her legal dept on Monday and see if they can't take it off, but I am still going to call a lawyer, she could have taken it off right then. As for probiotics, I do take them. I thought I was getting an ulcer from all the sh** going on lately but not according to the scope I had done. I don't blame you for not having the bronc. done. I really think less is more !! I like that saying " a bunch of dolts" . I'll have to remember that. Hope all is well with you now.
Well I will keep you updated as this plot thickens !

[marta]

Holy moly!!!! So they've been treating you as a syphilis patient since 2011. That is utterly shocking. Not just the character business (as the disease 'they gave you' comes with some inherent judgement) but also the fact that they've perhaps not been treating the right disease. There are some serious iatrogenic implications and risks involved with this. Stand your ground, and make sure that there is some accountability. Wow. Mind blowing. 5 years of misperception.

At least you got it now. Maybe they'll treat you with a little more respect in the future. Something great will come out of this... just watch.

I'm heading in for an RTX cocktail on May 30, and have been on 50mg of pred for two months now - that's all that's holding me, but my exponentially ballooning face feels like it's about to explode... all good though, been here before. Know this gig inside out, so I know soon, life will come back to normal.

You take care of yourself, and go in there with love and some fighting spirit on Monday. Fix this wrong, and heal on!

[Debbie C]

No Marta....It was this one resident that spelt it wrong, when you spell it wegners instead of wegeners it is syphilis. I had a lung biopsy that shows I have it and they also have wegeners granulomastosis on my chart so all is good as far as my treatment. The thing is that everybody ( drs.,nurses whoever sees that will think I ALSO have syphilis. )

Sorry to hear you have to up your pred so high..I think I would go nuts if I was raised up again ( mentally ) I had to get just a small cortisone shot in my hand the other day and I was up half the night. I am just a whimp when it comes to meds. I will be praying that the rtx does its job quickly for you. Take care and good luck with the infusion.

[marta]

Oh that's good. I'm glad it didn't affect the treatment you were getting all these years. That would have totally sucked. It still sucks a bit, but not as bad as it could have.

The pred is crazy good for pain and crazy bad for life (anything other than the pain.) I'm so looking forward to getting the RTX going and getting off the pred. It'll all be great. I've figured out how to deal with the emotional side of the pred and am surprising even myself how calmly I'm dealing with it... too bad I can't control the physical symptoms the way I can the mental ones... wishful thinking. I'll show you the time lapse video of my expansion/shrinkage once it's done... My doc thinks I'm nuts for doing a time-lapse, I like to keep her guessing. He he he.

Take care of yourself and your tummy. I've always thought that dealing with stomach issues is the worst - it makes me into the biggest wimp. Take care buddy.

[vdub]

I'll show you the time lapse video of my expansion/shrinkage once it's done...
Now that I have to see. It will be a classic.

Deb, how do the docs get syphillis from wegners? That doesn't make sense. When I google syph, I see that the test for it is called wassermann, but I don't see anything close to wegners. I think I'd be upset too.

[annekat]

Deb, how do the docs get syphillis from wegners? That doesn't make sense. When I google syph, I see that the test for it is called wassermann, but I don't see anything close to wegners. I think I'd be upset too. I was wondering the same thing. I googled Wegners and all I got was that it was a misspelling of Wegeners, nothing about syphilis. Well, whatever, the important part is that someone really messed up and needs to be held accountable! I mean, if you had a saddle nose, I could see them thinking you either had syphilis or were a cocaine addict, which would still be wrong conclusions to jump to! But I don't think you have a saddle nose. I've had pharmacists think I'm taking Bactrim for chronic UTIs and that I'm taking MTX for arthritis.... not nearly as bad, but people in the medical or pharmaceutical fields, shouldn't jump to conclusions, period! It is unprofessional and very inconsiderate of patients.

[marta]

Now that I have to see. It will be a classic.

Deb, how do the docs get syphillis from wegners? That doesn't make sense. When I google syph, I see that the test for it is called wassermann, but I don't see anything close to wegners. I think I'd be upset too.

I got similar results when on Dr. Google, but blamed my non-finding to my pred head. Still an error that needs to be fixed pronto, if only to dispel the inherent judgement that comes with such a diagnosis, especially in a judgement prone society as the one we live in.

vdub, I'm still in the throws of serious expansion... it'll might take a while, but I'll persevere :ohmy:
I can't believe the difference in just a month and a half.

[drz]

If you search for Wegner sign of syphilis you should find something. Here is one:

Wegner's sign : a broadened, discolored appearance of the epiphyseal line in infants who have died from congenital syphilis.
another:
Wegner, Friedrich R.G., German pathologist, 1843-1917.
Wegner disease - inflammation of the epiphyseal line associated with congenital syphilis. Synonym(s): syphilitic osteochondritis
Wegner line - a narrow whitish line at the junction of the epiphysis and diaphysis of a long bone, related to syphilitic epiphysitis.

It seems like another Friedrich with almost the same last name also left his mark for discovering a medical issue. It is not quite the same as vasculitis though.

[marta]

Leave it to you buddy.
I can go blaming my pred head again.
Oh, those Wegner (Wegener) types...

[BookNut]

Deb, My husband just found something on the chart printout they gave him...something he does not have. My braiin is dead and I can't remember now what it was. Now he will have to get the folks in charge to change it. It will be important to tell every doctor about this error. there are docs who still depend on the personal notes/ summaries they keep based on their own thoughts as well as charts. It is probably best to have an in-person chat with each doctor the next time you see them.

I hope you feel better soon!

[annekat]

Leave it to you buddy.
I can go blaming my pred head again.
Oh, those Wegner (Wegener) types...

Yep, excellent sleuthing, DRZ. Weird.