I go there. Here is a copy of what I sent to other users who have asked about this hospital:
I'm probably not going to be the best resource for you, since I haven't seen the CF docs in a few years. But I did see them until I was 21, though it's now been four years. From what I understand, the adult doctor sees his patients in the same clinic that the pediatrics go to, but he only takes appointments on certain days of the week (although you could probably see him in his own office every other day, you just wouldn't see the whole team). His name is Dr. Riker, and from my experience with him he was nice. I saw him once when my insurance was a PPO. With the PPO though my parents were paying too much for my actual hospital bills, so we switched back to an HMO. Well he didn't take Blue Cross HMO at the time (he may now, I don't know) so I switched to Dr. Krueger. He is a pulmonologist, but doesn't specialize in CF. I am comfortable going to him, though, because if he has questions about my care or new treatments he just calls over to the clinic and talks to them. Also, I've taught him a lot and he's made an effort to educate himself more on the treatment of CF just since I've been going to him. I've seen him for almost 2 years now and I have no problems with him.
What I remember about the clinic was I would see the CF doc, gastro doc, social worker, a nutritionist, and sometimes a respiratory therapist. All of which were VERY nice and always listened to what you had to say. I never felt like I was being rushed out the door. In fact, I always forgot that I needed to allow at least an hour and a half for appointments! The social worker's name is Julia Greenwald, and I LOVE, LOVE, LOVE her! I still talk to her and I even invited her to my wedding! The respiratory therapist, Tom Newton, would come in and make sure I was using my flutter, acapella or vest (whichever I was currently using) correctly or tell me about new techniques and such. The nutritionist (can't remember her name) is nice, but she hardly shows any emotion. The doc's nurse (she isn't there anymore, though) was always very helpful if I needed to be seen right away. I can remember one time feeling like death warmed over and my dad called and talked to her. She set everything up for me to be directly admitted to the hospital without any hesitation. Also, I used to be a server in a restaurant and one day the pediatric doctor, Dr. Nussbaum (google him, he is AWESOME!) sat at my table, not knowing that I worked there. He asked me why I don't go to clinic anymore and I told him it was because of my insurance. He pulled me aside and said "You NEED to go to clinic, don't worry about the insurance, we will see you no matter what." He just genuinely loves his patients and wants the best for them. If the adult doctor is anything like him, you will be so happy if you decide to switch.
I do see the clinic team when I am in the hospital, though, if they know I'm there. Since I don't see the CF docs, the rest of the team sometimes doesn't get the memo that I am in. I see a doctor everyday that I am in the hospital; the rest of the team I just see on an as needed basis. I don't really have gastro problems so I don't see that doc; the nutritionist I see sometime in the beginning of my stay and she orders me snacks, checks my vitamin levels, talks me into taking my scandishakes, etc. I'm sure that if I needed them more than that they would come.
I have never gone to a different hospital, so I don't have anything to compare it to. On the adult floor it seems that some of the nurses aren't very familiar with CF (in fact one woman called it CH). I am very outspoken and I pay attention to everything that they do to me. If I see that something isn't right, I let them know. I am very nice about it, and I don't make it seem like I am trying to tell them how to do their job. Sometimes you get the bitchy nurses that give you attitude, but mostly they just say something like "you know so much about your condition, it's good that you pay attention to what's going on." This last time I was in I asked the nurse to be unhooked from my IV, since I didn't have any meds going in, so that I could go downstairs to get some real food from the cafe and to go see the newborn babies. She told me that nobody is allowed to leave the floor. I politely told her that I'd been coming here for 25 years and I've ALWAYS left to go downstairs! The docs encourage it because it gets you out of bed! Well the next day I talked to my doctor and he wrote orders for me to be able to go down. He was surprised she said that too! I only go into the hospital about every year, year and a half. If I was a more "frequent flier" the nurses might be a little more leniant about some things.
