Do you get to speak to the docs from your CF clinic while in the hospital? I had some questions about my daughter's medication and as usual, emailed her primary CF doctor. He told me I had to speak to the hospital resident for the remainder of the hospitalization. I would really rather speak to one of the experienced CF docs and am unhappy about this. We've also never experienced this at other CF centers.
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communication w/doc while in hospital
- Thread starter anonymous
- Start date
I can understand your frustration, i wouldnt want some "resident" who doesnt even know her to be the one with all the answers to my questions. More than half of them only know a handful about cf, so i can certainly understand your being upset. When i am hospitalized i always keep in contact with my cf doctor. Now i know the resident is the one who oversees my care while i am in there ( thats his job) but he doesnt get to just make random decisions on his own about my care, my cf doctor does that. But even though my cf doctor makes the decisions , its the resident who everyone listens to, so he has to write all the orders for everything i would need.
2
2sickkids
Guest
Mine to they are great while my boys are in the hospital. First thing in the morning.
blindhearted
New member
Tell the doctor that you want speak with him on certain matters rather than a resident, being that he is your daughters main care provider. You dont mind a resident talking with you or your daughter or working with her, but you will feel more comfortable if you were also able to speak with a doctor you know and trust with your daughters care. Try to explain that to your doctor (probably more effective on the phone than email). Most doctors would understand, hopefully he will too.
When Kait is in the hospital the resident is the doctor that we see alot of but her CF doc visits also. The CF doc is the one makes all of the decisions regarding her care and treatments while in the hospital and after we are home. I would really insist on talking to the primary CF doc that sees your child and knows your child. I felt very upset when our primary CF doc that we always requested to see started doing more in research and not in clinic as much. ( kinda selfish i know, but he is a really good doc and i totally trust him making decisions about my daughter and i know that he really cares about his patients.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
Kaitsmom<img src="i/expressions/rose.gif" border="0">
I strongly encourage you to push for more involvement with your CF doc while you are in the hospital. Mine visits me every single day when I am hospitalized, and if he's off, he has one of his partners come. The residents and hospitalists have tried to change my CF doc's orders, but because I am so insistent, I won't let them change anything without checking with my CF doc first. On at least two occasions the hospitalist's choice would have been completely erroneous and would have set me back. I have made it 53 years with this challenging disease, and I know it's largely because I am so assertive with the medical community. I am so fortunate to have a CF doc who trusts my and his instincts. If you don't feel comfortable with what someone is telling you in the hospital, keep pushing. The patient (or child's parent) has the ultimate say about what is or isn't done to their body, and don't ever forget that. Doctors are not gods. They are part of your team, and they should respect you. I can't even imagine why the hospital wants to take such a big risk messing around with such specialized care unless the resident is actually trained in CF care. Be strong, and be well. It is amazing how much can be done to help us lead wonderful lives!
Our childs CF doc was there for us at every step during her hospitalization and it was very helpful for us. If your CF doc is not doing that, you might have to talk to the National CF Foundation (as they are the ones who accredit the CF docs). Maybe your docs may need a little "talking to" so to speak. If you don't mind saying, where are you from?
I go to Barnes-Jewish Hospital in St.louis and their pulmonary team is great I talk to my doctors every morning....Dr. Rosenbluthe, is a great guy, when he's there he comes in twice a day once in the morning and once in the evening just before he goes home to check to make sure i have all that i need before he goes..Dr. Atkinson is another one that goes out of his way to make sure you understand what's going on and if there's anything he can for you... The nurses and staff on 3200 of the lungcenter are all Great!!!
Crzy_Dimon
3200--St.Louis
Crzy_Dimon
3200--St.Louis