I go to the Adult clinic at Hopkins and I don't really care for them. I can NEVER get an appointment, no matter when I call. I always end up having to get 'squeezed' in because I get sick between appointments. For example, I called on Monday December 3rd and the SOONEST "my" doctor could see me was January 10th, or February 14th. That's nowhere near an acceptable time frame if you ask me.
I'm not sure if I just started off on the wrong foot or what, but I feel like everyone but the Nutritionist hates me? When I first arrived at Hopkins I had the absolute worst time scheduling my first intake appointment. I left numerous messages and emails but no one ever got back to me. Finally I got through to someone and they had just been calling the wrong number all this time? My first hospital experience was terrible. I was on IV's for 4 days, (3 waiting for my picc) got my picc went home. On day 5 I complained that Picc was not right, and I was told 'its normal' just put heat on it. By day 7 I told them I wanted an ultrasound so they sent me. I had a clot from my elbow to my collar bone! Yikes. They pulled it out that day and put my on orals.(side note, first clot I'd ever had due to such a poor Picc placement!) I have worked incredibly hard to stay healthy enough to stay out of that hospital. I feel that everything done at Hopkins, not limited to this Clinic at all, but overall, everything at Hopkins is done on the basis of convenience to the doctors and not to the patients. Blood work is only done at 3am inpatient? Are you kidding me? Overall not a pleasant experience. And my picc line? I have ALWAYS gone down to IR to get conscious sedation and was told point blanke that's "Not how they do it here, so it won't happen."
Like I said, I think I got off on the wrong foot with everyone because I've been trying very hard to rewrite our experiences to be good ones, but each time I leave feeling rushed out of there and not listened to. I think they genuinely don't like me. It's so sad because I was really looking forward to being part of a team I've heard great things about. I will continue to go becaues I live 20 minutes away, and I will continue to be nothing but nice and open and we'll see how it goes.
I also sometimes feel like they don't listen to me. I'm 24, I know when I am getting sick, I have tell tale signs: small low grade fevers at the same time every day, loss of appetite, loss of energy, increased mucus, thicker mucus, etc. etc. I called once to be seen because I was having all these symptoms and then a new one - a rash- and they said "Oh that doesn't sound pulmonary go see your general practitioner," who then diagnosed me with Pulmonary pneumonitis. Not pulmonary. psh! Everything always relates back to My CF in some way, so it was absurd they refused to see me! I felt very hurt at a time when I was very sick.
Overall, I would head back to my old clinic in Richmond in a heartbeat if they would still see me (it's a children's clinic and they just added a new adult clinic which is why I don't go back). =(
