Adjusting to Life With CFRD

Being diagnosed with cystic fibrosis-related diabetes shortly after a lung transplant was difficult. But, working with my doctor helped me create a strategy to make it easier.

| 5 min read
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Tiffany Rich
Tiffany Rich Smiling at the Pool

It always baffles me that cystic fibrosis not only causes lung, digestive, sinus, and liver issues, but it also has its own form of diabetes called CFRD -- cystic fibrosis-related diabetes. Before transplant, I was not diabetic, but I was tested annually for CFRD by taking the 2-hour glucose tolerance test. Yes, I had to drink the nasty drink. However, after prepping for a colonoscopy, that glucose drink isn't so bad anymore. It reminds me of flat soda, which -- in comparison -- I can deal with! It wasn't until I received the gift of life in 2016 -- a double-lung transplant -- that I developed CFRD. As you can imagine, my life changed overnight. I was on the new journey of post-transplant life, now able to breathe, but also now insulin-dependent.

CFRD has a mind of its own and managing it can be tricky. The goal is to keep blood sugar (glucose) levels at (or near) normal. I do this with a combination of watching what I eat and taking insulin. I do use the carb-counting method to regulate my blood sugar. I always log my insulin dose and the carbohydrates that I consume, and this helps me understand if I need to adjust the amount of insulin that I take. I use an app called MyFitnessPal to log food. It helps me keep track of my carbohydrate and calorie intake and helps me maintain my weight. I definitely need to keep the weight on to help fight infections and illnesses and to keep myself healthy.

Learning to use a blood glucose monitor that requires a finger prick was quite the struggle. It hurt. I finally found a lancet that helps decrease the pain of the poking. The lancet uses vacuum technology to suck up the blood so you don't need to pierce the skin as deeply. Since I was having difficulty maintaining my blood glucose levels, I wanted to talk to my doctor about how I can make this process a little bit more comfortable.

My endocrinologist -- my diabetes specialist -- suggested that I try a continuous glucose monitor (CGM).

I test my blood sugar more than four times a day and take more than three injections a day of insulin, so I qualified for it. I was hesitant to try it because I was over having devices connected to me. Since I was younger, I had either an IV, oxygen, or feeding tube attached to me and the thought of having something else was a bit hard to wrap my head around. We decided that I would try it out and if I didn't like it I wouldn't commit to it.

Once I tried the CGM, I was hooked. I have been using it for almost two years and I absolutely love it.

Some of the reasons why I love my CGM:

  1. Less ouch -- I do not have to check my blood sugar all the time. The only time I do check my blood sugar with a finger stick is to calibrate my CGM.
  2. I can read my blood glucose level any time from my phone. I do not have to scan anything; I just open the app and it tells me where my blood sugar levels are.
  3. Alerts -- my CGM alerts me when I my blood sugar is too high or too low. It even wakes me up in the middle of the night to adjust. I was always scared of nighttime because I previously never had a device to wake me up if I my blood sugar was out of line.
  4. It's pretty small and I hardly remember it's attached to me.
  5. My blood sugar control has improved so much since using it. I have been feeling so much better day to day knowing my blood sugars are under control.
  6. Easy to document when I take insulin and to see how my blood sugars are trending.
  7. I can easily share my blood sugar levels with my endocrinologist.

Having a CGM has improved my quality of life by causing me less pain and allowing me to go about my life without a bunch of bruised fingers. I feel great on a daily basis since my blood sugars are under control with my CGM, and I am so grateful to have this device and my healthy CFRD life.

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Tiffany was diagnosed with cystic fibrosis at birth in 1989. She received a double-lung transplant in November 2016, and has since been recovering and enjoying her second chance at life. A California native, Tiffany enjoys makeup, anything Disney-related, Taylor Swift, and helping the CF community through her YouTube channel LUNGS4TIFF and joint Instagram account @SaltyCysters. Tiffany credits her amazing support system for helping her maintain a positive attitude throughout her struggles with CF, and is very grateful for the life she lives.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.