Ask The Advocates: Unexpected CF Symptoms
There are symptoms that people with CF expect to experience, like frequent coughing and lung complications. However, CF can contribute to many other symptoms that we may not consider. We asked our advocates, "What are unexpected CF symptoms that you have experienced or are experiencing, and how do you manage them?" Here's what they told us.
Response from Cheriz K
I manage day-to-day stiffness by not sitting for too long of a period. I also am careful about my diet and how many hours of sleep and rest I get each night.
When I have a CFRA flare-up I get fever, fatigue, red spots, and my joints freeze up. Typically, I manage by not moving around, resting, and taking prednisone and ibuprofen. But it can be difficult to deal with while being a parent to an energetic special need 4-year-old. I just do the best that I can and have lots of support from family and friends.
Hemoptysis and CF-related diabetes
Response from Kenny Boutot
My understanding of CF for much of my early life was that it impacted me only in the ways I could actively observe: my lungs, digestive system, and sinuses. In my day-to-day life, those were what I spent my time treating, and I was mostly fighting congestion, infections, and pancreatic insufficiency.
I’m still learning new ways of managing both issues, but my primary goal is to prevent exacerbations or spikes in my blood glucose. I maintain the view that if I can avoid any additional stress on my organs, they won’t be as compromised when I’m faced with the next unexpected complication.
Response from Janeil Whitworth
Pain is difficult to live with. In my experience, it is also really difficult to talk about. I have been lucky to have a CF doctor that is a great listener and problem solver. She has made me feel comfortable talking about my pain and always reminds me quality of life is the number one goal. We have used a variety of medications, exercise, and heat to keep me comfortable and functional.
Absence of the vans deferens
Response from Misty Roussa
One of the unexpected (but common) CF symptoms my son is experiencing is his absence of vas deferens, which is medically known as Congenital Bilateral Absence of the Vas Defrens (CBAVD). CBAVD was confirmed during a hernia surgery when he was two years old. While extremely common in males with cystic fibrosis, it was still a blow to me that he had such a developmental symptom of the disease.
As of right now, since he is only 11, this is not something that we are managing in real time. However, it will need to be addressed in the future. I do think about it in terms of HOW we will have that conversation, as well as him having to have that conversation with his future significant other. My husband and I have agreed that this conversation needs to wait until he is much older and out of his young dating years, for obvious reasons. But it is something that I do think about and am trying to prepare for.
Response from Nicole Driscoll
Perhaps the most unexpected symptom of CF for me has been the digestive issues I have faced. At birth I had meconium ileus. I had a life-saving surgery, which resulted in intense scarring across my entire abdomen.
It never phased me, really, until I was a young adult and began experiencing bowel obstruction from the internal scarring. This would leave me in excruciating pain and has landed me in the hospital on multiple occasions. The pain and suffering this has caused me was really quite unexpected and probably some of the most painful CF-related symptoms that come to mind.
Response from Megan Barlow
CF and its relation to colon cancer is a newer conversation. However, this conversation has been a part of my life since I was about 14 years old. At that time, doctors didn’t think having colon polyps was necessarily related to having CF. But to me, the connection made sense.
I had polyps in my nose, why wouldn’t I have polyps in my colon? We now know that people with CF are 5-10 times more likely to be at risk for colorectal cancer than the general population.
Fourteen was a young age to have to start getting colonoscopies, and definitely one of my least favorite things I have to do to this day. But, this is something I follow the doctor’s orders on, and have been getting colonoscopies every 1-5 years (depending on the outcome of the previous) since then.
Have you experienced unexpected CF symptoms?
Tell us about your experience in the comments below, or share your story with the community.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?