New CF issues

CFRD...Cystic Fibrosis Related Diabetes.

As we, with CF, age there are many complications we may never have dreamed about before.  As many are probably aware, CF patients are getting older...more than half of all CF patients are now over the age of 18.  Because of our malnutrition and breathing complications, our bodies tend to experience more issues as we age and we experience these issues at a younger age than a healthy individual.  It is wonderful to see us all becoming adults and living happy lives.  But with that we still have to worry about our health.

I have recently been diagnosed with Cystic Fibrosis Related Diabetes.  I was on the very edge of being diagnosed for quite some time and was always hoping I could hold it off as long as possible.  But life's funny like that.  As we say..."if you want to make God laugh, tell him your plans."  Right now my diabetes is extremely mild, we caught it very early because of all the monitoring.  Well actually, that's a lie, sort of.  I went to my physical with my PCP so that I could get a referral for my (now past) sinus surgery...this was several months ago. Well at my physical, my doctor gives me the order for blood work and says, you can come back for that since I know you have to get back to work.  Well I knew I wouldn't get back anytime soon and I wanted to make sure I did everything right for this surgery. I mean, that's the whole purpose of getting my physical...to make sure my body was up for the surgery.  Well the blood work showed an elevated Hemoglobin A1C (or HBA1C).  This blood test measures your red blood cells over the prior three months and is not often used for CFRD diagnosis because the red blood cells in CF patients don't stay healthy long enough.  BUT if you notice this number trending higher, it can signal CFRD.  Mine has always fluctuated between 6.0 and 7.0...the cutoff is about 6.5.  The note my PCP wrote on the results page was something like "your A1C indicates Diabetes, please see your endocrinologist to discuss treatment options."

So I emailed my Endocrinologist...She is/was conducting a study with other CF patients to see if there are better ways to diagnose CFRD.  The ultimate test is called a Glucose Tolerance Test (GTT), which by the way is MISERABLE, namely because you are making a CF patient fast for 12 hours before.  Then you drink this super sweet, almost like flat orange soda syrupy stuff and they check your blood sugar every half hour for 2 hours  So my Endo got me into this study and I think I am like patient #3 or something.  The study starts off with a GTT and other blood work and then you wear what's called a Continuous Glucose Meter (a device the size of a quarter that measures your blood sugar every 15 minutes) for 2 weeks.  I can't see the results in real time, but I was given a hand held meter to check my sugars before and after meals.  At the end of the two weeks, you peel the CGM off your arm and send it back so they can analyze the numbers.  So my results showed I go pretty high after breakfast and lunch.  Like any number consistently over 180 is too high.  So my Endo prescribed insulin to take in the mornings and yes it's a shot.  The pills don't typically work on CF patients.  It's not a terrible pain, but a bit of a nuisance.

I can't say I'm surprised with the diagnosis, I saw it coming for a while and was kind of just biding my time and enjoying life.  The problem with CFRD is that it's not quite Type 1 Diabetes, but also not quite Type 2.  With Type 1, your body just doesn't produce insulin, and it's usually diagnosed in childhood.  It is ONLY treatable with insulin.  Type 2 is more prevalent in people with poor dietary habits or overweight people. For this type it can sometimes be controlled with diet or with extreme weight loss.  CFRD is kind of a mix especially with me at this point.  Right now, clearly my body is producing some insulin because I don't need to give myself shots with every meal.  And even sometimes with breakfast, I probably don't need it.  Or if I exercise, I don't really need it.  My body just isn't producing enough or not releasing it in time to reach the meals I've just eaten. My diabetes will not likely go away, it will likely eventually get worse and I will probably need insulin with more meals.  Some people with CFRD have it full blown needing insulin ALL the time right when they are diagnosed, some take their time to need it all the time.

One thing that has surprised me is my reaction to the diagnosis.  I hope you've read this far, because this was the original intent of this post.  I started this insulin dose May 1 and have not told anyone except immediate family.  I don't know the protocol for telling someone you have a chronic illness this late in life.  CF has always been there, I was six months when I was diagnosed, so it's something I've always known, not a surprise.  How do I break it to the people who love me that I also have this other chronic disease now?  Not to mention, one of the difficulties with CFRD is that we still have to maintain our caloric intake in order to maintain our weight.  So when we get CFRD, we don't have to adjust our diets, we adjust our insulin dose.  I don't want to be judged because I still have this gigantic appetite.  And I feel like when I start telling people, they're going to think less of me.  They are going to think I'm taking advantage or pushing buttons that should't be pressed, taking risks and using insulin as my only way out.  I didn't think it was this hard to be diagnosed with a chronic disease.  There are a whole hell of a lot of emotions running through my brain.  Like, I haven't even told my boss.  If anyone should know, it's her.  If something goes wrong and I am sick at work or having low blood sugar how is she going to help me if she doesn't know.  I'm so baffled that I am made so speechless by something I know so much about.

EDITED TO ADD:  I also don't want people feeling bad for me!  That's a huge part of my anxiety over telling people.  I don't want the sympathy, the "oh you have CF AND diabetes.  That must suck."  I don't know how to get over this feeling.  I don't want my friends and family to worry.  I don't know, I guess I kinda don't feel like its real yet.  It's such a small need of insulin that I don't feel like it's really necessary to tell people.  Hmmph.  Tips and tricks would be appreciated if you've been in my shoes! :) 

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If you have CFRD or any other chronic illness and were diagnosed later in life, how did you handle it?  How did you bring up the topic?  Would love to hear some of your tips and tricks!