CF-related diabetes and liver disease affect me every day

All symptoms aren’t created equal. They can be visible or invisible and range from manageable to unbearable, even debilitating a person for days on end.

With cystic fibrosis (CF), symptoms can last a lifetime and affect far more than the lungs. Some even develop into separate diseases, creating additional medical issues.

Two of these comorbidities affect me daily: CF-related diabetes (CFRD) and liver disease. I’ve touched on both briefly in past columns, but today, I want to focus on these conditions.

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CF-related diabetes

In our community, CFRD may not be as common as symptoms like coughing up blood, but the comorbidity affects about 20% of those with CF, according to the Cystic Fibrosis Foundation.

At the end of summer in 2007, I began taking prednisone after dealing with multiple lung infections and asthma to boot. After a week or so on the medicine, I began noticing that I was thirsty and Coke was the only way I could (briefly) scratch that itch. After my doctor and my mom went over bloodwork I’d completed that weekend and realized I was diabetic, I was admitted to the hospital for a week. While there, my main doctor and an endocrinologist monitored my blood sugar levels and administered insulin.

At the time, I thought prednisone was the main culprit behind my CFRD. After all, I didn’t have this issue before.

Then, something strange happened: My diabetes mysteriously disappeared in the spring of 2008 and didn’t come back full throttle until the fall of 2021, when I was hospitalized for pneumonia. My doctors believed that if I could normalize my blood sugars, then I wouldn’t experience as many lung infections. They explained that higher blood sugar levels leave my body, especially my lungs, more susceptible to infections that cause pneumonia.

While my levels still haven’t stabilized, my glucose numbers are better than they were a few years ago. Plus, I haven’t lost any weight. In 2007, I lost 15 pounds in the few weeks after I was prescribed prednisone. I once again lost 15 pounds when I had pneumonia in 2021. My body was unable to digest and process any nutrients I consumed because diabetes rendered my organs incapable. With the help of insulin, I was able to regain my weight.

CF-related liver disease

Because I have rare mutations, CF affects my digestive system more than my respiratory system. As the Cystic Fibrosis Trust notes, “Around 40% of people with [CF] will have some liver abnormalities, although only around 5-10% of the CF population will experience problems with their health as a result.” While my lung infections have played a role in the severity of my diabetes, and vice versa, glucose is processed through the liver, so that organ is more directly impacted by my CFRD.

My liver dictates much of my life, whether I think about it or not. I’ll start with a fun fact all my friends and family know: I don’t drink alcohol. While people applaud me for not drinking like I’m in a straight-edge band, I don’t have a choice. Refusing alcohol complicated my social life in high school, college, and the stand-up comedy scene.

It’s not that one drink will kill me. I just know I have an addictive personality (see: my reliance on Coke to get me through my then undiagnosed diabetes), and alcoholism, combined with my poor liver, could quickly become fatal for me.

On top of that, I see a liver disease doctor every six months and do bloodwork every two or three months to monitor my liver enzymes. They’ve been higher recently because I’ve been on antibiotics for my lung infections, but not to the point where they’re indicating hepatitis or jaundice.

While these are the main comorbidities that affect me daily, CF can result in a wide range of nonrespiratory health challenges like malnutrition and infertility. (I’m among the 97-98% of men with CF who are infertile.) Hopefully, one day I’ll have access to a CFTR modulator that can ease these conditions, but until then, I will keep persevering.

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.