Living with CF related diabetes

This past week has been a tough one for managing my diabetes. And I have no idea why, which is the most frustrating part. It's strange how after everything I've been though with the transplant and cancer, the thing that affects me the most on a day-to-day basis is my diabetes. A disease I didn't fully understand the level of frustrating it causes until I had to start taking insulin.

Just a quick refresher, CF related diabetes (CFRD) is a mix between type 1 and type 2. It's becoming more common as people with CF are living longer and the years of mucous build-up causes scarring on the pancreas, causing it to produce less or no insulin (like type 1). Also, the amount of steroids people with CF take may cause them to become resistant to insulin (like type 2). 

Some people can control their CFRD through diet and exercise but most people (like me) are required to take insulin. It's hard to cut out all sugar and carbs from a CF diet due to the struggle to maintain a healthy weight. While that's easier for me since the transplant as prednisone has increased my appetite 100%, I still can't cut out all the easy calories like white bread and pasta just yet.

Even if I did change my diet, I would still have high sugars as a lot of it is caused by the prednisone I take to prevent rejection. While I was diagnosed with CFRD before the transplant, it didn't kick into high gear until afterward with the new medication. I'm not sure if I would be considered to have medication-induced diabetes since the steroid is mostly the reason for my sugars. I was told it would improve with my dose being lowered but that hasn't made a significant difference. I haven't asked anyone for the official label because it really doesn't matter. Either way, I have to stab myself multiple times a day.

I take a long acting insulin that is designed to peak at the same time as the increased effect from the prednisone, around 7-8 hours after I take it. I also take a short acting insulin before every meal that peaks 2 hours after injection to align with digestion. All together, 4 injections a day plus multiple pokes to check my sugar levels. The injections still hurt sometimes. My dietitian claimed they were "no worse than a mosquito bite" but she lied. My stomach and thighs are covered with tiny bruises and bumps from the injections even though I rotate the injection site.

The reason this past week has been so hard is that I keep getting sugar crashes (hypoglycemic, to be technical). I find it strange how I can go for weeks without a single crash and then have three in one week. There doesn't seem to be any pattern which is the most frustrating part. The only time the crashes make sense is if I take too much short-term insulin before a meal and then don't eat enough carbs to balance it out. I try to adjust my insulin as much as possible based on the meal but I sometimes get it wrong.

Exercise also lowers blood sugar and on the days that I know I'll be more active, I cut back on my long acting insulin to avoid a 4pm crash. However, this doesn't always work as I can still sometimes crash out a few hours after exercise. Or during exercise. Or at 3 a.m. I can not figure it out.

I'm lucky that I get physical symptoms from low sugars which doesn't happen to everyone. A lot of people with type 1 diabetes have had so many crashes that they become "hypoglycemic unaware" which means that their bodies have stopped giving signals when the blood sugar drops. Thankfully my body still gives me a warning instead of just passing out or slipping into a coma. If I'm sleeping I'll wake up with sweats and feel faint but some people just lose consciousness with no warning. That's when having one of the dogs trained to smell low blood sugar would be helpful.

When I'm crashing out, I go to the kitchen where I devour everything in sight. The diabetes manual I was given told me to drink a small cup of juice and then check my levels after 15 minutes. That sounds great but at that moment, I need to have more than a small cup of juice. I want to eat everything and find it very hard to stop. I know rationally that as soon as the sugar from the juice or cookie brings my level back up, I'll feel fine and I don't need to eat the entire bag of trail mix or half of the cake but its hard to translate that to my body. It's like my body is in panic mode and thinks every single possible calorie is required to get through the next 5 minutes. After about 10 minutes, I stop sweating and start feeling normal again. I'll check my sugars again to make sure everything is back to normal and then carry on with my day (or sleeping).

I'm very thankful at how good the technology for managing diabetes is now. If I wanted, I could get a blood sugar meter that texted me (and my family) the results (although those ones aren't covered by my drug plan). The insulin pens are ridiculously easy to use compared to syringes (although more expensive if not covered) and pumps are becoming smaller and easier for those with Type 1 diabetes.

I've obliviously only had experience with the current technology but when talking to older nurses or doctors, they go on about how much easier everything is now for patients which makes compliance that much better. Compliance and management is so important with diabetes because uncontrolled sugars can cause heart problems, blindness, nerve damage, and slow to heal infections. All of those things can happen with controlled sugars too but is less likely.

It's hard to have a disease where I try to manage it perfectly and do everything by doctor's orders and there are still moments when I have a blood sugar of 15 (high) or 3.5 (low). It's like lung failure with CF where you do everything right but still decline. Only diabetes provides more immediate feedback every time I get the insulin dose wrong for some random unknown reason. It's terrible.

The end.