Ask the Health Leaders: More Than Our Lungs

A common misconception about cystic fibrosis is that it only impacts the lungs. We asked our Health Leaders what other parts of their health are impacted by CF. Read on to hear what they had to say.

Response from Mikayla:

My entire life I have dealt with stomach pain and digestive issues more so than my lungs. Dealing with abdominal pain is frustrating because of everything that goes on in there. It is difficult to get a diagnosis, or cause of pain, or for my CF team to find the right medications. Especially since CF affects so many parts of the body. I feel that over the years the research and care for CF problems aside from the lungs has gotten more extensive, and in my opinion, better. I’m not just working with enzymes anymore!

Response from Meagan:

While I can’t speak for CF patients, I can speak for myself on how CF affects my mental health. This is something I strive to understand more and try to keep an open line of communication for my daughter as she grows. There is so much she has to do every single day to keep a baseline of health. I know enforcing the routine and schedule takes a lot out of me mentally and emotionally, and I’m not even the one doing the actual treatments.

The constant fear of Margo getting sick and not being able to overcome it is something I think about instantly when I hear her cough in the night. I know CF adults who battled the common cold which led to severe sinus infections, and then they have to go through various different antibiotics to find one that will work. Is this in my daughter’s future? How can I help her deal with that beyond making sure she does the physical treatments?

Right now my daughter has started to realize that CF makes her different, that other kids in her class and around her school don’t have to do hours of treatment and take hundreds of pills every week. Dealing with the emotional implications of this realization is a lot. It’s hard to find the words to try to make her feel better, and I know as she grows there will be more questions.

Something that has greatly helped me is therapy. It is so helpful to talk these issues out to an objective listener. I am open about my therapy journey and hope both my daughters know it is an option for them when they are ready.

Response from Ella:

I am someone whose lungs are primarily affected by CF, however, digestive issues have also always been a constant problem. Despite taking digestive enzymes, eating healthy, and trying to pay attention to symptoms, oftentimes there is no rhyme or reason for stomach pains, gas, bloating, etc. It’s something I have learned to deal with as there are no new treatment options to mitigate these symptoms.

Response from Moriah:

In addition to CF (or, more accurately, because of CF) I also have cystic fibrosis-related diabetes (CFRD). As a child (about 20 years ago), my parents were never told about or warned that cystic fibrosis-related diabetes could be an issue, so they tried to feed me all manner of high-calorie snacks and foods - many of which were also high in sugars.

It wasn't until I was 18 years old that my CF doctor thought to have me tested and evaluated for diabetes. At that time it was determined that I would be able to control my blood sugars through dietary management, but a few years later I was prescribed insulin treatment. Since then, I have added a diabetologist to my care team and have learned so much about how blood sugars interact with CF and the complications it can cause if not properly managed.

One of the biggest complications I've experienced personally is weight retention (or lack thereof). When blood sugars are out of control (high, in my case) it can make it really hard to gain and keep body weight. I found this especially interesting because diabetes is usually associated with obesity and excess weight gain.

Another complication of CF diabetes is that high blood sugar can make it more difficult to fight off infections in the body; these infections, in turn, can also cause an increase in blood sugar levels. It's a very unfortunate cycle.

What parts of your or your loved one's body have been most impacted by CF? Share it below in the comments!