Rainbow Babies and Childrens Hosp, Cleveland OH

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ej0820

New member
Hey there!
I'm wondering if any of you go to RB&C in cleveland for CF care. More specifically, does anyone here see Dr. Robert Stern? I'm having some problems that I hate to admit. I've always LOVED this center but am having a really hard time with communication. To make a long story short, I'm left being more than just my own advocate. I feel any sort of treatment I need, I'm doing all the work and the running around to get it. I had to see an Infectious Disease doc for a bug for a while (I was on IVs for over a year). Well, my CF doc and ID doc NEVER talked with each other. I would see one doc, they would tell me one thing, I'd see the other, and they'd say the opposite. It was this constant "He said, She said" BS. I complained about it a couple times with no real resolution. The ID doc prescribed an abx that my CF doc told me had too many serious side effects. The ID doc wanted me on it, CF doc didn't - yet, it took ME just bringing it up in conversation to the CF nurse to even find that my CF doc didn't want to treat me with it the way the ID doc wanted. It was a mess and a HUGE headache. I thought it was due to my ID doc sucking at life.Well, now I'm dealing with this same situation but regarding sinus surgery. My CF doc isn't getting in touch with the ENT as much as I feel I need. I had been calling the ENT about scheduling a surgery and calling my CF center for IVs before the surgery. I would call the ENT and they'd say, "Well call your CF doc and tell him this." So I would and I'd get, "Well, call the ENT's office and tell them Stern wants this done." I mean, I feel like if I weren't doing as much work as I am trying to get this all taken care of, it would NEVER happen properly.I've heard that this sort of "right hand isn't talking to the left hand" nonsense is common in large hospitals, but I've talked to many other CFers that do not have this problem at their centers. Does this happen to you others that go to RB&C? Have any of you experienced this with Stern? I'm not sure how to handle this and it makes me a little nervous of harder times to come...Thanks for any responses.
 
E

ej0820

New member
Hey there!
I'm wondering if any of you go to RB&C in cleveland for CF care. More specifically, does anyone here see Dr. Robert Stern? I'm having some problems that I hate to admit. I've always LOVED this center but am having a really hard time with communication. To make a long story short, I'm left being more than just my own advocate. I feel any sort of treatment I need, I'm doing all the work and the running around to get it. I had to see an Infectious Disease doc for a bug for a while (I was on IVs for over a year). Well, my CF doc and ID doc NEVER talked with each other. I would see one doc, they would tell me one thing, I'd see the other, and they'd say the opposite. It was this constant "He said, She said" BS. I complained about it a couple times with no real resolution. The ID doc prescribed an abx that my CF doc told me had too many serious side effects. The ID doc wanted me on it, CF doc didn't - yet, it took ME just bringing it up in conversation to the CF nurse to even find that my CF doc didn't want to treat me with it the way the ID doc wanted. It was a mess and a HUGE headache. I thought it was due to my ID doc sucking at life.Well, now I'm dealing with this same situation but regarding sinus surgery. My CF doc isn't getting in touch with the ENT as much as I feel I need. I had been calling the ENT about scheduling a surgery and calling my CF center for IVs before the surgery. I would call the ENT and they'd say, "Well call your CF doc and tell him this." So I would and I'd get, "Well, call the ENT's office and tell them Stern wants this done." I mean, I feel like if I weren't doing as much work as I am trying to get this all taken care of, it would NEVER happen properly.I've heard that this sort of "right hand isn't talking to the left hand" nonsense is common in large hospitals, but I've talked to many other CFers that do not have this problem at their centers. Does this happen to you others that go to RB&C? Have any of you experienced this with Stern? I'm not sure how to handle this and it makes me a little nervous of harder times to come...Thanks for any responses.
 
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katethekid

Guest
I went to that hospital when I was around 5 or 6, but it was just for sinus surgery and CF treatment a few times as I lived in Florida. My Mom always said the hospital was great, there is very little I remember about the hospital since I was so young. I do remember it was the first time I saw snow though and the nurses let me play in it for a couple minutes. I hope you get everything worked out, you need to focus on feeling better, not on the stuff the doctor should be doing. Please keep us updated and good luck.
 
K

katethekid

Guest
I went to that hospital when I was around 5 or 6, but it was just for sinus surgery and CF treatment a few times as I lived in Florida. My Mom always said the hospital was great, there is very little I remember about the hospital since I was so young. I do remember it was the first time I saw snow though and the nurses let me play in it for a couple minutes. I hope you get everything worked out, you need to focus on feeling better, not on the stuff the doctor should be doing. Please keep us updated and good luck.
 
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rubyroselee

New member
Hi Erin -

I have been going to RB&C since I was born and have had nothing but WONDERFUL experiences there. Having said that, I never had Dr. S. I realize he is a very "wise" doctor and has been around the block more than a few times, but I have heard similar complaints about him from my other CF friends that have seen him. In fact, recently, one of my CF friends told me a similar story about how Dr. S was not treating her infections appropriately. All of them have switched to Dr. Dasenbrook at this point and have been more than happy with their switch. I see Dr. D and he is great. I would think before you jump off the RB&C ship that you should try another MD there. Plus, he's a pediatric MD, so you should technically switch anyways (and that's a good reason for you to mention why you want to switch).

I have been to a few other clinics (other than RB&C) and I cannot pry myself away from them. Even though I moved out of state, I have continued to stay with them for my clinic. I feel that they are top-notch and have all of the best up-to-date information.

Let me know how it goes and if you decide to switch - PM me if you want.
 
R

rubyroselee

New member
Hi Erin -

I have been going to RB&C since I was born and have had nothing but WONDERFUL experiences there. Having said that, I never had Dr. S. I realize he is a very "wise" doctor and has been around the block more than a few times, but I have heard similar complaints about him from my other CF friends that have seen him. In fact, recently, one of my CF friends told me a similar story about how Dr. S was not treating her infections appropriately. All of them have switched to Dr. Dasenbrook at this point and have been more than happy with their switch. I see Dr. D and he is great. I would think before you jump off the RB&C ship that you should try another MD there. Plus, he's a pediatric MD, so you should technically switch anyways (and that's a good reason for you to mention why you want to switch).

I have been to a few other clinics (other than RB&C) and I cannot pry myself away from them. Even though I moved out of state, I have continued to stay with them for my clinic. I feel that they are top-notch and have all of the best up-to-date information.

Let me know how it goes and if you decide to switch - PM me if you want.
 
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