When it comes to explaining cystic fibrosis, my opening line is usually, “I have cystic fibrosis. It's a genetic lung disease.” I feel this covers the bases -- I am not contagious and my lungs are the main source of the problem. However, as I have gotten older, my CF care team has grown, and I have realized that CF affects much more than just my lungs.
Although the lungs are often the focus of the disease, CF affects people in multiple ways and many other concerns can develop. For example, I was born with meconium ileus and spent 28 days in the neonatal intensive care unit (NICU).
Bowel complications became an issue again when I was 19 and went on a trip with my best friend to New York City. The day before we left, I was feeling very sick, which we attributed to nerves. After a miserable two-day trip and a flight change to come home early, it was official: I had a bowel obstruction. I spent the next month in the hospital recovering from surgery.
Since then, I have had three more bowel obstructions that each required extended hospitals stays but, thankfully, no surgery. I have gone to the emergency room thinking I had another bowel obstruction only to find out it was actually kidney stones. I still have kidney stones today even after having lithotripsy to remove some of them. Sinus surgery is also very common. I've had over 10 sinus surgeries to remove nasal polyps.
While each of these “complications” relate back to my CF, they are not what usually comes to mind at the time of diagnosis and disprove the myth that CF is “just a lung disease.”
As evidence of just how many areas CF can affect, my mom even started a spreadsheet listing all my medical procedures, medications, and hospitalizations that I bring to all of my appointments. It has been a lifesaver, and most doctors and nurses are so thankful that I have this. Not only can it be frustrating to repeat the same thing over and over, but I can also demonstrate just how complex the disease can be and let them know which aspects of my health to consider before making any treatment decisions.
Because of my CF, I will never have a doctor that can be a “one-stop” shop. My current CF care team consists of a pulmonologist, otolaryngologist, urologist, gynecologist, dietitian, gastroenterologist, and more. Each doctor has an area of expertise, and it is so important that they work together to determine the best diagnosis and treatment plan for me. The doctors you surround yourself with can have a huge impact on how you feel, and in my experience, having a close relationship with them is crucial for making you feel comfortable and involved in decisions.
If there's one thing I've learned from the CF community and my care team, it's that my illness is not the same as everyone else's. In fact, I may have symptoms or complications that are completely different from what someone else with CF is experiencing. It is important not to label CF as only involving certain symptoms or side effects because it can be much more. Each patient is dealing with different and ever-changing concerns but having doctors who take an interest in your well-being can help you overcome the new obstacles.