CFRD is . . .

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.

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5 thoughts on “CFRD is . . .

  1. Oye! Isnt CFRD a treat?? ha! I don't know your carb ratio but when I first started taking insulin my A1C was about 6.5 or 7 I can't remember exactly. So I went on a 30/1 ratio every 30 carbs to 1 unit. (I was also on a few units of long acting stuff due to being on prednisone!) This worked well until I started crashing after breakfast with insulin. We're talking I woke up from a morning nap feeling like I was going to pass out… and I tested 43! EEK So we cut out morning insulin and I was good as new. THEN that started to happen with lunch too. Cut out lunch. Finally I was on a 40/1 ratio — next to nothing — for dinner only. uhhh? Fast forward I no longer take insulin but notice when I'm sick my need for it goes up. CFRD is sooo tricky. Have you noticed any pattern? Are your numbers always low 3 hours after breakfast? Or always high 3 hours after lunch? etc etc. Finding anyyy type of pattern is helpful I think. My only suggestion, If you don't already have it, would be buying the calorie kings book (not the exact name but its real close to that). I was glued to that book for carb counting. It was SOO helpful. Because seriously who knows how many carbs a fresh avocado has? It's not like it comes with a nutritional facts label. PLUS it makes going out to eat and carb counting easy and possible! =D good luck!

  2. Beth – thank you so much for your comments and sharing your story with me. It helps more than you know! Right now, I'm on dinner only insulin but I think that's going to to change because I have to keep gaining more weight. I have found a pattern here and there and then something seems to disrupt it and it's no longer a pattern. Not fun..you're right it's beyond tricky!! Thank you for sharing the book title. I will have to pick it up. I just downloaded an app for my phone which keeps track of my calories but it doesn't necessarily have the carbs. Good call!! I will be visiting a Barnes and Noble soon 🙂

  3. I am so glad to see this post. I just went to the doctor yesterday for the first time to start insulin. They are starting me off with insulin before each meal and carb counting. I have a great relationship with my CF care team so my nutritionist is going to help me learn how to carb count and send me a book about it. I just feel like this is another thing I have to do each day, my schedule is already packed. I wish there were 25 hours in a day. My doctor keeps telling me that I will feel so much better once I get on insulin and I am feeling pretty good now, so I can't wait to see how great I feel. Did you gain a lot of weight when you went on insulin? I love gaining weight, so I look forward to that, too.

  4. JWags -I hear you about the 25 hours in a day thing. Sometimes the days go by so fast and blur together, I have to ask myself if I did all my treatments and took all my meds! It's going to be tricky to get the hang of it at first, but hopefully you will adjust well to it. I've been adjusting for quite some time now and still haven't gotten the hang of it. I was also, however, very reluctant to go on the insulin. I will say that I do ENJOY having the insulin because I can eat whatever I want again (which is wonderful)! So far, since starting the insulin 2 months ago, I have gaineda bout 5 pounds. I'm looking to gain another 5 pounds over the next month or two. My weight right now is 115 and my height is 5'4" so I definitely need to put on some more pounds.The more insulin you take, the more it will help you gain the weight (it's a growth hormone). I'm on such a low dose, I think it's more the additional calorie intake than anything else at this point.Let me know if you have any questions (I may still be confused about it but I can sure offer my personal experiences). 🙂 GOOD LUCK!

  5. I am not sure if it will be helpful, but CFF hosted a webcast all about CFRD Sept 20th, but you can watch the archived videos. Some of their webcasts are helpful and some are not. I have yet to watch this one so I can't promise it will be any good, but who knows it may have some useful info.

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