“How can I tell what is normal and what is not normal?” This is the question I asked my doctors when explaining my sinus symptoms.
This is also something I have asked for most of my life in regard to all my symptoms.
It is a redundant question as the definition of normal can be different depending on who is asking.
For me, my normal has always been my CF and the impacts it has made. But the issue I have run into time and time again has been trying to determine if certain things are “normal” for CF or if they are “not normal”. It is a hard question to answer as our individual experiences are what dictate our sense of normal. But nevertheless, I believe that everyone with CF has had this question when trying to figure out their symptoms.
My most recent experience with this has been with my sinus disease. I have had problems with my sinus all my life, but I was never sure if it was directly due to my CF or different health issues. Growing up in the country in the Riverina region, a notoriously bad area for hay fever, I had experienced sinus disease symptoms which I always assumed were just allergies. As I got older, and my symptoms progressed it was clear that there was something else going on.
When I exercised, I couldn’t breathe through my nose, I was the ‘loudmouth breather’ guy and my sinus headaches were getting more frequent. I had always known my polyps were unusually large, but I had no idea how much of this was due to CF.
I asked my team what was normal, and they never had the answer as it was impossible to determine. It was only recently when I started looking into this issue with sinus specialists, I discovered how CF affects the sinus and what makes it different from “normal” sinus disease.
What I learned is that to understand our symptoms the more knowledge we have the better. By comparing information from CF specialists with that of a sinus specialist we were able to come to an understanding of what was happening in my nose.
Thanks to my two specialists I was able to get treatment and eventually surgery to address my disease. The surgery took into account my CF as well as my non-CF-related symptoms.
The surgery itself was quick, the recovery however was not. Two weeks of pain, discomfort, and unable to breathe through the nose made me wonder if it was going to be worth it. But 5 weeks post op the benefits of a clear Sinus and fixed nose is beginning to surface.
Perhaps the most invasive part was the removal of the splints that were put into place to aid in the recovery. Measuring far longer than I would ever have expected, they were pulled out after 16 days. As gross as it was the relief of suddenly being able to breathe normally was incredible.
Sinus disease and CF is one of the less understood fields I discovered. But through works done by both Sinus and CF specialists, we are gaining a greater understanding of how we are affected differently.
The confusion of what’s normal and not normal in regard to CF is something that will always come up in conversations with myself and my team. What I have learned is that there is no such thing as ‘normal’. The only way we can determine what is normal for ourselves is by understanding all aspects of a symptom both CF-related and non-CF-related.
CF Strong would like to help this confusion by discussing these sorts of questions with specialists through podcasts, and to be a resource for those uncertain of their own normal. The Podcast on CF sinus disease is already live on our website. I hope my experience can be a resource as well for those who are uncertain about their own sinus symptoms as well.
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
