The things we are most wondering about are:
How aggressive are the doctors with managing your disease?
How good are the doctors/nurses about getting back to you when there is a problem?
How proactive is the team?
How do you feel the quality of the team is overall?
How easy is it to get an appointment?
HOw well does the clinic run?
HOw do you like the hospital?
Does your clinic do tune ups?
Do you feel that your clinic is cutting edge?
Is there anything else we should know in choosing a clinic?
Hi there,
I am 19 yrs old and my brother also has CF and is 18.
We started off at CHOC when we were very young but because of their lax approach to treatment, we made a quick switch to Long Beach.
Dr. Nussbaum was our head doctor and his aggressive approach to therapy has been a positive for not only my brother and I, but so many other people living w/ CF.
As we grew older, we did not see him in clinic as much because he was working with in-patients the majority of the time.
We saw two other doctors instead, but our results were not the same as they were with Dr. Nussbaum and it was not as consistent as before.
The other doctors are very good at what they do though.
Our nutritionist is great, my brother has G-tube and they have worked very hard with him in helping him gain weight. He has exceeded his expected height and keeps growing and putting on the lbs.
Clinic visits are on Tuesdays, usually in the afternoon. I would recommend getting in there early because a later time would make you wait around for a while.
The hospital itself is not that great. It is dirty and in the middle of Long Beach. Like we say time and time again, we don't go there for the looks, but the docs.
The clinic does do tune-ups. I have had three so far. The doctors are good at knowing that you have a life outside of hospital. When they put you in, they want to get you out. This does depend on the person and situation, but my brother and I usually stay in for 3 to 4 nights then continue IV meds at home. The docs don't think it is wise to stay around and catch anything else if our blood levels and stats are normal.
I think the clinic is cutting edge. The team goes to conferences all the time and work hard to maintain a good reputation. They are very open to new ideas. My mom always bring in articles or new news that she hears about.
My brother and I just made the switch into the adult department. We are very pleased with the doctor and his assistant. They seem to know what they are talking about and have so much hope for my brother and I. They know we can and will live long healthy lives.
The transition was easier than I thought. Our pulmonary doctor changed but the rest of the staff remained the same---nutritionist, respiratory therapist, social worker. I have known them my whole life and am so glad they can stay with me.
Our social worker is amazing! Her name is Julia Greenwald. She has helped with so much and truly cares about us. It is like we are her kids.
She will help with anything.
If you are considering Long Beach, I would call over them to speak with her directly over any questions. She will know anything you may ask or need.
Hope this helps, Good luck! I hope you guys find the best place for you.
How aggressive are the doctors with managing your disease?
How good are the doctors/nurses about getting back to you when there is a problem?
How proactive is the team?
How do you feel the quality of the team is overall?
How easy is it to get an appointment?
HOw well does the clinic run?
HOw do you like the hospital?
Does your clinic do tune ups?
Do you feel that your clinic is cutting edge?
Is there anything else we should know in choosing a clinic?
Hi there,
I am 19 yrs old and my brother also has CF and is 18.
We started off at CHOC when we were very young but because of their lax approach to treatment, we made a quick switch to Long Beach.
Dr. Nussbaum was our head doctor and his aggressive approach to therapy has been a positive for not only my brother and I, but so many other people living w/ CF.
As we grew older, we did not see him in clinic as much because he was working with in-patients the majority of the time.
We saw two other doctors instead, but our results were not the same as they were with Dr. Nussbaum and it was not as consistent as before.
The other doctors are very good at what they do though.
Our nutritionist is great, my brother has G-tube and they have worked very hard with him in helping him gain weight. He has exceeded his expected height and keeps growing and putting on the lbs.
Clinic visits are on Tuesdays, usually in the afternoon. I would recommend getting in there early because a later time would make you wait around for a while.
The hospital itself is not that great. It is dirty and in the middle of Long Beach. Like we say time and time again, we don't go there for the looks, but the docs.
The clinic does do tune-ups. I have had three so far. The doctors are good at knowing that you have a life outside of hospital. When they put you in, they want to get you out. This does depend on the person and situation, but my brother and I usually stay in for 3 to 4 nights then continue IV meds at home. The docs don't think it is wise to stay around and catch anything else if our blood levels and stats are normal.
I think the clinic is cutting edge. The team goes to conferences all the time and work hard to maintain a good reputation. They are very open to new ideas. My mom always bring in articles or new news that she hears about.
My brother and I just made the switch into the adult department. We are very pleased with the doctor and his assistant. They seem to know what they are talking about and have so much hope for my brother and I. They know we can and will live long healthy lives.
The transition was easier than I thought. Our pulmonary doctor changed but the rest of the staff remained the same---nutritionist, respiratory therapist, social worker. I have known them my whole life and am so glad they can stay with me.
Our social worker is amazing! Her name is Julia Greenwald. She has helped with so much and truly cares about us. It is like we are her kids.
She will help with anything.
If you are considering Long Beach, I would call over them to speak with her directly over any questions. She will know anything you may ask or need.
Hope this helps, Good luck! I hope you guys find the best place for you.