CF-related diabetes has been a perplexing challenge for me
The diagnosis added another layer of complexity to life with cystic fibrosis
Growing up, one of the worst parts of having cystic fibrosis (CF) was the gross orange cocktail I had to drink as part of my annual oral glucose tolerance test. This nightmarish, faux sports drink is full of glucose and is used to screen for diabetes. For years, I was considered prediabetic. Then, 19 months ago, after a particularly rough patch full of stress, burnout, and sedentariness, I was diagnosed with CF-related diabetes (CFRD).
CF affects the pancreas, sometimes resulting in insufficient insulin production. Because CFRD shares traits with both type 1 and type 2 diabetes, I jokingly call it “type 1.75.”
Pancreatic insufficiency can cause many people with CF to have difficulty gaining weight. Maintaining a healthy body mass is important for fighting off infections, so many of us do everything in our power to achieve this. In fact, when I was a child in the early 2000s, those of us with CF were instructed to prioritize gaining weight above almost all else. Unfortunately, this type of situation can lead to disordered eating, which may be further complicated by a diabetes diagnosis.
CF is frustrating in more ways than I can count, but CFRD has proven particularly perplexing and challenging for me.
Adjusting to life with CFRD
Diabetes is always at the front of my mind, forcing me to think about everything I put into my body. Food was already complicated for me, as I ruminated a lot about my eating patterns and have long struggled with body image issues. Then, after my CFRD diagnosis, food became even more complicated for me.
Now I have to be extra cautious about added sugar and processed food, consider how each meal will affect my blood sugar, and know what to do when my blood sugar is high or low. I’ve tried different medications, but each had its share of side effects. I also tried time-restricted eating, and while it proved beneficial, the restrictive aspect was hard for me.
My CFRD diagnosis forced a paradigm shift and added yet another degree of difficulty to life with a chronic disease. I’ve needed another clinician and additional medications, and I’ve had to establish new standards to keep myself healthy.
Frankly, I’ve struggled with this diagnosis, as it is yet another reminder of the challenges and limitations that come with CF. It has created even more tension in my mind as I struggle to feel grateful for my body while also being frustrated about how it seems to betray me.
It’s been over a year and a half, and I’m still grappling with my new reality. But this is the first time I’ve written about CFRD, which means it’s one of the first times I’ve truly reflected on how life-altering it is. I’m reminded of my mortality and how much effort is required to give myself the best shot possible at a long life.
One thing I’ve learned from living with CF and grieving loved ones is that we must pay attention to the ways we interact with the world, whether that’s the food we eat or the people we spend time with.
This diagnosis has also forced me to consider what is and isn’t in my power. I’ve never known life without CF, so I learned from a young age that there were some things I simply could not control. That’s why finding things I can control is liberating. I first became passionate about exercise for that reason.
A CFRD diagnosis doesn’t mean I’ve lost all control; it just means I have to reassess what I can do to take care of my health.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
About the Author
rROBERT C. DERR (BOB)
KEEP UP THE GOOD WORK! MY YOUNGEST SON DIED DUE TO CF IN 1998 TWO DAYS BEFOR HIS 19TH BIRTHDAY. I FORMED PACFI IN 1986 (SEE WWW.PACFI.ORG) IN AN EFFORT TO HELP PA FAMILIES WITH THE DISIEASE. I RETIRED FROM PACFI IN 2004 BUT I REMAIN INTERESTED IN 'WHAT'S HAPPENING' IN THE CF WORLD. I'M ALSO INTERESTED IN YOUR THOUGHTS ABOUT WHAT IT MEANS TO BE HUMAN. IF YOU EVER GET THE CHANCE, FIND A COPY OF BURKE'S TOUR WHICH TELLS YOU ABOUT MY SON'S LIFE (I'M THE AUTHOR). WISHING YOU ALL THE BOEST! BOB
Brian C
Hey, Tre’, I can definitely relate. I feel I’m a bit older, 58 with two copies of F508. No transplant as of yet because Trikafta been life-changing. 12 years ago however I too was diagnosed with CFRD. Life-changing to say the least. Our whole lives we’ve been told like you said to pack on the weight, pack on the calories and really at that point, nothing else mattered. A lot of that time I did not have an appetite so I simplified my choices. For the most part for breakfast, and many will laugh, I ate one box of macaroni and cheese and at work for lunch I would eat two peanut butter and jelly sandwiches and a glass of milk. Dinner was whatever our family was having, just a lot of of it! I also drank a lot of ensures along the way and normally went to bed pretty miserable. CFRD changed all that. Now I had to balance eating right, gaining weight with low blood sugar or at least controlled blood sugar. My body image is definitely a priority as it has been my whole life which is something I’m trying to manage. I’m constantly learning new things and the Dexcom has helped immensely with my own personal education. We are all built different and we all metabolize things differently. At 52 years old, prior to Trikafta I retired from work due to cystic fibrosis and opted to spend more time taking care of myself. Obviously Trikafta is helping and I now have more time to go to the gym (four times a week) and occasional walk on the treadmill. Throughout the day I am always outside working on something. I am however a self appointed fixer thanks to YouTube! :-) I would like to say that things get easier but I believe they’re ever changing especially as we age. The best advice I could give is just don’t be overwhelmed and take things in stride. Things might be more different today than yesterday but that doesn’t mean that there’s not a system that won’t work for you. Us CF’ers, are more resilient than most because we’ve had to deal with more than most. My wife and kids keep me hopping as well. I have twin 22-year-olds through IVF and growing up I never thought that would’ve been possible! The advancements are incredible and historical! The pipeline is getting richer every day so everything we can do by taking care of ourselves, advocating for ourselves and others, and if possible helping by volunteering for research studies.. thanks for sharing!
Tim Blowfield
CFRD is categorised as Type 3c Diabetes. Yes it has characteristics of Type 1 where there is insufficient insulin and Type 2 where there is insulin resistance. generally it is considerred to be caused by destruction of the pancreas caused buy blockage og the pancreatic duct. But it seems more. There appears even in pwCF there are actually 2 types - 1 more like Type 1 and another more like Type 2. Reva, my late wife, developed CFRD late in her 83 years of life. On occasions she had Hypoglycaemia that responded poorly to normal treatment with Glucose or sugar until it was included in an Electrolyte drink. This suggests the abnormal electrolytes seem to play a part. It appears that the faulty Chloride channel causes abnormal electrolyte level in all cells. In the insulin producing cells in the Pancreas it appears that it affects their proper function. This may be the reason why CFRD is so weird. Need more research.
Julia
Wow, I never related to an article more than this one. I am a 17-year-old with CFRD, and I also have had some struggles with body image, and as you mentioned, CFRD makes it worse. Food is constantly on my mind, and how my sugar levels will be affected if I eat something. I tend to avoid most carbs so that I don't have to worry about my levels shooting up, but then there's my CF team telling me to eat more carbs... it is all hard to manage on top of CF. Thank you so much for writing this article; reading it made me feel SO much less alone.
Also, I love this line: "A CFRD diagnosis doesn’t mean I’ve lost all control; it just means I have to reassess what I can do to take care of my health." The only way to live life it through a positive point of view.
Maureen
What a well written article! My almost 19-year-old son also has double Delta f 508 and is on the cusp of CFRD. Ever since his blood sugar was somewhat abnormal almost 3 years ago, it feels like it's been a waiting game. I, too, feel like it would be a very difficult diagnosis to manage, especially up on top of CF. Thanks again for sharing your thoughts.