Venting about clinic

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thefrogprincess

New member
Ok, I'm participating in a research study and went in today to do a portion of it. I only go in every 6 months for this one. Anyway, my PFTs were down 13 points from last time. The doc in charge of the study said to get into clinic in the next week or 2 maybe go on antibiotics. So as soon as I left I called to make an appointment. Of course they didn't have anything until June 13!! I said that wasn't going to work so I was transfered to the office of the nurse practitioner who runs the show and "it will be up to her if I can get in sooner". Of course she was out of the office so I left a message. The part that makes me nuts is it being up to the nurse practitioner. Exuse me!?! Is she a doctor? Does she know how I feel? She's actually new so I've never even met her! If she tells me I can't get in I'll have a fit. I've always believed that I'm in charge of my health care, not the doctors or nurses, and if I feel like I need to go in then they need to bend over backward to make it happen!!

Well, thanks for letting me vent. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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thefrogprincess

New member
Ha! I'm tempted sometimes.

The nurse called me first thing this morning to get me in, but of course not for 3 weeks. Gotta love it.
 
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anonymous

New member
Our clinic has a drop in service, meaning if you're feeling unwell you just ring the cf nurse up and then you come in( to the hospital)..Explain to that nurse practioner, that other clinics operate in this way and that you're NOT going to sacrifice your health just because it isnt 'CONVINIENT!!!'
Sorry if I sound annoyed, it just gets up my nose when people are made to wait weeks or even in your case months, when your health is at stake!!

Shamrock, x
 
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anonymous

New member
I dunno what clinic you go to, but I go to the one in toronto canada. There have been many occassions where we are sick and are told we cant get into hospital til an empty bed becomes available. Do what I do, tell the doctors they couldnt possibly tell you how sick you are cause they dont have cf and walk into the emergency room. You will be seen immediately. If i could run the clinic there it would be alot different.
 
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anonymous

New member
froggy, I wouldn't put up with that crap if I were you. I am sorry but that is just not right for them to do. If it were a follow up, something routine...I could completely understand. I would try talking to the nurse again, and if that doesn't work, I am a big fan of going all the way to the top and over some people's heads. If they aren't competent enough to do their job, somebody big needs to know about it. I would even go so far as to write a formal complaint if this continues and becomes a pattern. Just my opinion though.

Julie
 
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thefrogprincess

New member
The doc in charge of the study said that as lung as the mucus is coming up (and it is) and that I don't get worse I can wait a couple weeks. I feel fine, my sinuses flared up a couple weeks ago, which irritated my throat, which got me to coughing. This has happened before and I wasn't culturing anything unusual for me, so I'm not worried about it. I doubt they'll even put me on an oral antibiotic. If I was feeling bad I would make a big stink about it and go to the ER if I had to. I've got most of them at clinic trained to know that I'm in charge and if I felt I needed to go in NOW I could.
 
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anonymous

New member
Giiiiirl! I know exactly how you feel! I hate calling in and telling them that I NEED to be seen because I know I'm gonna havta deal with the crap! Look, you don't see me here struggling to breathe! You need to get me in. Then even when I'm in the hospital it seems like I get the same crap. Some of the nurses come in and are like, "oh, you don't look sick at all!" DUH! because my lungs aren't inside out! Lemme do that for you so you can see just how sick I really am! I dunno how old you are, but I'm 20 and ever since I started handling my own appointments and such, I just don't get the same respect that my parents would! It's so irritating! Hang in there girl, we all feel your pain!
 
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thefrogprincess

New member
Yeah for some reason they think once we hit adulthood, our brain shuts off. When I first started going to adult clinic (I'm 23) they wanted me to start inhaled TOBI, the problem with this is that I've still never been on IV antibiotics because I culture whimpy bugs. Exuse me, have they ever heard of antibiotic resistance??? I thought they were the doctors! They think that a CFer in there 20's is on death's door. Meanwhile we see people on here that weren't even diagnosed until their 30's!!!

You just have to let them know that you're in charge. It took about 3 years but I finally got them to stop bugging me about TOBI and clinical trials with antibiotics.
 
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jenhum

New member
That is just crazy!!! I amlucky that if I am not feeling well, I've never had a problem getting an appointment that week....my doc would freak if she found out I had to wait 3 weeks to see her when I needed to! Can you contact your doctor directly? Fortunately the nurse practitioner at my clinic is AMAZING, and I can e-mail her with anything and she takes care of it. But I also have my doctors direct line and e-mail address in case I can't get through to anyone else. I would make sure and ask your doctor what exactly you are supposed to do if this happens again!
 
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anonymous

New member
I don't even go to the Adult CF clinic in Phx. Dr. Gong is less than professional and always has an "I'm better than you because I'm a doctor" attitude. I have found that its more effective to just work with my PCP and have him contact the CF clinic for treatment advice, ect.

I may be the only one, but it just seems like after you turn 18, you are no longer considered to be the cute child that is worth saving...
 
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anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>

I may be the only one, but it just seems like after you turn 18, you are no longer considered to be the cute child that is worth saving...<hr></blockquote>

chah, ill second that...........
tomo
 
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