CFRD is way too confusing!
Let me begin by saying that cystic fibrosis was never an adjustment for me because it is all I have ever known. I was diagnosed at birth and I’ve always popped pills, inhaled drugs, and been beaten on (so dramatic sounding, isn’t it?) by a person or a machine. It’s just my normal routine – nothing odd about it.
Cystic Fibrosis Related Diabetes (CFRD) is a whole other ball game. It has been, by far, the biggest adjustment in my life. I have gone from eating whatever I want, to (wrongly) carb restricting myself, to finally starting insulin all while my sugars bounced any which way they wanted.
With the start of insulin, my sugars have been great 2 hours after meals (usually 130 or below). However, come three hours after, my sugars will rise to 160 or higher. It’s like my body digests so slowly that the insulin doesn’t last long enough to cover my food. But then come the following morning, I will eat breakfast, be 160 two hours after and 60 three hours after. Needless to say, it’s been a confusing juggling act.
With my sugars acting like this, it’s obvious I needed to get in to my endocrinologist. She, however, is on maternity leave, which meant seeing another doctor for the day. No problem, right? Sure, if I had a normal case of diabetes, but unfortunately, I don’t. . . .
Let’s start by saying that our drive up to University of Chicago was easy and beautiful. It was a crisp Autumn morning, traffic was light, and we even found a parking spot. I had high hopes that I would get some answers at this appointment today, given our streak of good luck this morning.
|View from the parking garage at U of C|
Sadly, that was not the case. Instead, I spent the first half hour of my 45 minute appointment explaining CFRD and how I have to just adjust for whatever I eat. There’s no 2000 calorie diet here and milkshakes are good for me. I then proceeded to explain how CF effects digestion and the liver as these were both questions she had. I understand that not every endocrinologist is a specialist in CFRD but it doesn’t help your confidence level as a patient when you are explaining your disease to your doctor.
I’m actually used to this, as I’m sure other cysters and fibros are as well. When you head into an emergency room or see a general practitioner, you become a teacher and the doctor becomes the student. It’s not done by choice, but it has saved my butt more than a few times. With this disease, you have to be your own advocate. That’s for sure.
Anyway, after explaining all of this to her, she says, “I’m just not really sure what to do here.” And I stare at her, like a deer in headlights. A million thoughts are going through my head and most of them are similar to, “But you’re a DOCTOR! I need your ADVICE!!” She then proceeds to tell me that I’m on such little insulin she doesn’t want to tweak it too much and while she thinks I may benefit from a long-lasting insulin, I also have lows so she doesn’t necessarily want to put me on that. She then says, “I mean, I don’t need your doctor coming back and I messed up her patient.”
Again, more staring on my part. I wish I could have offered some brilliant suggestions to her here, but I am so confused with my sugars that I have no idea what to even suggest. So we just kind looked at each other, nodding heads, unsure of what to do in the awkward silence.
She then adjusts her papers and goes, “Well let’s get an A1C and go from there. I’ll call you in a week or so with a plan.”
Ok…well that was a waste of 6 hours, 10 dollars in parking, 5 dollars in gas, and a copay. I still have no idea what to do with my insulin and I feel stressed that I’m not able to get help with it either. I’m sure glad I kept my appointment with my regular doctor in October…hopefully she’ll be able to guide me in the right direction.