Here’s another classic: you’re in the ER and the doctor finally saunters in after you’ve been there for hours, and one of the first things he asks you is, “how long have you had CF?”
I want another doctor. Now!
I’ve watched my doses from the home health pharmacy come in with a Tobra dose for a 75kg person. Who told them I was 75kg? I was 43 or so at the time.
I’ve left the pharmacy with one box of Pulmozyme when my Rx is for twice a day (60 vials/month) and had to go back to get my full amount, not once, but twice.
Growing up in a small town in Ohio, I’m sure we put the pharmacist’s kids into every one of their cars and through college with our own supplies. In a town of 40,000, I was likely the only person there who had CF – we had to drive an hour to our CF center in Toledo.
I’ve had nurses access my port with a 1″ needle… crooked! They’ve not made sure the connections were all tight in the tubing and have bled out all over my street clothes in clinic. I’ve been told that I can’t eat or drink any number of ridiculous things in the ER or hospital because no one has a clue what CF is. One time a nurse woke me up at 1am concerned with the lines/wrinkles on my arm and shoulder. The arm and shoulder I was sleeping on! They’re called “sleep marks” and everyone gets them, you freak of nursing. How did you get your RN license?
There are enough CF patients in and out of a CF center’s wing every week that an RN can be assigned to a CF patient to learn rather than assume they know everything about nursing, because CFers are not the same as everyone else.
We are independent, mostly intelligent, and very well-schooled in our care. We will know if you screw up, and there are enough of us that will let you or your supervisor know how much you suck.
I had the distinct pleasure of hearing my CF doctor reaming the head floor nurse one time over refusing to give me an enema when I had an intestinal blockage. “What harm will it do?! His history shows that it works and the man is asking for a tube shoved up his [butt] for medical reasons!” That was when I really started to like my doctor.
And respiratory techs… how annoying can you be to tell me how to do an aerosol? Did you even bother to check my chart to see that I’ve been doing more aerosols than you’ve given in your career?
What are your medical staff stories of nightmares?