I have CFRD and I have a question...

Hi Leah.

I don't have CFRD myself, so am not the best person to answer your question regarding that.
I was just wondering whether this is a regular doctor who has said this, or a specialist CF doctor?

I know doctor's can't always get it right, and even the specialist doctor's you have too pester before they will actually listen properly. But, still the best doctor too be treating you and giving you advice, is one that knows more about CF as whole, even chest physician's can't crack it (as our new consultant is finding out the hard way.)

I used to go to a shared care clinic. Where every 2 months I was seen by a normal paediatrician, every 6 months the prof from our nearest CF center came down with a CF nurse, and then once a year I had an annual review at the proper CF center, where I saw a physiotherapist, dietician and had all proper tests done.
During the months where I was just seeing my paediatrition, everything was apparently coming back normal, and he kept just prescribing us cough syrup. But whenever the CF center came down, and took back a sputum sample with them, it was showing up infection.
I know now that this was because the local hospital, don't analize samples as closely or look for CF related bugs, like the hospital with a CF center do.

I now travel 2 hours, to be seen at the CF center, and things are looked at more closely, and never passed off as a cold. Trouble is, geniuses my CF doctors are, that is all they are good at. They aren't even too bright when it comes too Asthma.

My advice-definately look to see if there is a specialised doctor in your area. If you already have a specialist, ask why he thinks it's just a cold. Sometimes, if your lung function is good, and you do a lot of excercise you don't drop much when you get a chest infection, which means sometimes, the infection just gets passed off as a cold. This happens with me. When I do have an infection, my lung function and SPO2 levels stay the same. I just feel a lot more tired, not hungry, breathless and generally feel yucky.

Oh hun, you sound really confused about it all:(

With me, they openly admitted, they thought everything was all in my head. Eventually they realised it wasn't, but it took a hell of a lot of pestering.

The thing with antibiotics, after a sputum sample has been taken, it comes back showing what bugs are growing and also the best antibiotic, that the bug is most sensetive too.

Can I just ask, have you been doing proper sputum samples, or just cough swabs?
Cough swabs aren't always accurate, and tend too miss a lot more than a sputum sample does.

I don't have CFRD but it doesn't sound like fun.
I know exactly how you feel because even when I don't feel good at all, my doctor says nothing wrong with me.
We're the ones who are sick, we would know!
My lung function went down to 50 2 weeks ago and I went straight into the hospital
ugh

I am new here, but I am concerned about SweetBlood and I hope you are doing ok. :) I know you posted this a long time ago, so I hope you will still receive my post.

I have CFRD too. I was diagnosed a long time ago, but didn't really take good care of my diabetes until recently. I have done a TOOOON of research about it, trying to get a better understanding so I can take better care of myself.

Diabetes takes a toll on your body and it REALLY affects your CF health. I spent years and years feeling horrible, sick all the time, exhausted. I am finally starting to feel a little better, although this has been the worst year for me so far CF-wise. It is hard to get blood glucose levels under control, but it is worth the struggle. I'd love to chat with you some about it if you would like, or check out my blog where I have some info about CFRD. I see a specialist endocrinologist who knows a LOT about CFRD and how it differs from the average diabetes, she also understands the struggles we have with CF alone. I try to share the knowledge she teaches me with others who aren't so lucky to have a great doc like mine.