I have CFRD and I have a question...

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sweetblood
New Member


Date Joined Nov 2007
Total Posts : 19
   Posted 11/13/2007 12:21 PM (GMT -7)   
I have cystic fibrosis related diabetes (CFRD) and I was just diagnosed a month ago. I have had infections that have not gone away for a couple years and my doctor says once we get my blood sugar under control, I would start to feel better, and my infections would clear up easier. The thing is, my blood sugar is under control now and I should start feeling better, but I'm not, I'm still sick and missing alot of school. My doctor says I'm fine, but I'm the one that feels horrible and I'm the one that had CF, not him. I think something else is going on, but I have no idea what. Sometimes, I feel like I know more than my doctor, and he should listen to me, not just pass off my infections as colds, and that is exactly what he has been doing. I'm starting to get a little freaked out.
Does anyone have any advice or help? I really appretiate it!
-Leah
A mighty oak is the result of a nut that held its ground.


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 11/13/2007 1:07 PM (GMT -7)   
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.
Co-moderator in the: Cystic Fibrosis Forums
 
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05


sweetblood
New Member


Date Joined Nov 2007
Total Posts : 19
   Posted 11/13/2007 5:29 PM (GMT -7)   
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.

Thats exactly whats going on with me! I see a cf specialist. He thinks its a cold, I think otherwise, I finally got through to him, and he put me on antibiotics, but the antibiotic he put me on doesnt seem to work as well anymore, I think I've grown immune to it or something. I told my doctor this also, but he doesnt think so. He fustrates me so badly! I always ask for a different doc. when I go to the clinic, but they wont let me see one. I dont think my doc. is doing all he can do to help me. I dont know...
A mighty oak is the result of a nut that held its ground.


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 11/15/2007 4:28 AM (GMT -7)   
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.
Co-moderator in the: Cystic Fibrosis Forums
 
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05


sweetblood
New Member


Date Joined Nov 2007
Total Posts : 19
   Posted 11/16/2007 9:53 PM (GMT -7)   
Yes, I just went ot the clinic today and they did a sputum sample and lung function test. My lung funtion is usually in the 110's, but today the were 40! That finally set off the little bells in their heads. They put me on three more antibiotics and if I'm not better within a week I have to be admitted to the hospital. Right before thanksgiving and right smake in the middle of basketball season! My favorite sport. I guess the doctors are doing something now.

A mighty oak is the result of a nut that held its ground.


cheerchix
New Member


Date Joined Nov 2007
Total Posts : 3
   Posted 11/26/2007 10:55 AM (GMT -7)   
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

Ally_0x
New Member


Date Joined Mar 2008
Total Posts : 5
   Posted 3/5/2008 8:11 PM (GMT -7)   
Hey, have you ever been tested for Cepacia or Pseudamonius?? I'm not sure if i spelt them right but there bacteria that grows in your lungs which can lead to decreased lung function and more lung infections. You should ask your doctor about it.

SaltyAndSweet
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 6/6/2008 12:23 PM (GMT -7)   
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.
Please check out my blog Salty and Sweet
Raising awareness of Cystic Fibrosis and Cystic Fibrosis Related Diabetes


Anoneyda
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/23/2009 10:20 AM (GMT -7)   
Finally!
I've been searching all over for places like this. I'm glad I found people with the same problem I have.
First, is anyone here blind? I am and I have a question for whoever is. Being blind and having CFRD isn't fun. The most I can do is stick my own finger. Other people give me the shots.
But I have a question that is bothering me, something anyone can answer. Can anyone give me as much injection sites as they can that I can use? I've been told some of them but I know there are more. Also, are the injection sites that you use supposed to get sore? Could it possibly be that the needle is being pushed in too deep? I considered it, but I'm not sure. I just need these answers. I'm getting a little worried. I plan to ask my endocrinologist when I go see her, but I want to know what other people say.
Thank you to whoever answers.
Afterthought: I hope Sweetblood is okay.
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