I was first diagnosed with cystic fibrosis earlier this year, at the age of 58. I am writing to share some thoughts I have about living with undiagnosed CF for the majority of my life.
Looking back at my childhood, I can see now how CF impacted my life. But at the time, my symptoms were never severe enough to raise concerns. I was always very thin and could never develop the muscle strength that my peers could. They said I must have a “high metabolism.” When I played sports that other boys did, like soccer, I remember becoming winded when running the perimeter of the field during practice and falling to the back of the pack. I played Little League baseball but always batted 9th while the players on the opposing team would call out to their outfielders to move forward for the “easy out.” It doesn’t take long being the proverbial 98-pound weakling — always the last one picked for the neighborhood kickball games — before it starts to affect you mentally.
Fortunately, I was born with a natural gift for math and science, and I developed good study habits. So I was determined to make academics the area where I would excel. I studied hard and graduated high school in the top one percent of my class, was the co-captain of my school’s math team, and went on to college where I continued to be a straight-A student — making the Dean’s List each quarter and eventually earning a degree in Electrical Engineering with highest honors.
It should come as no surprise to anyone familiar with CF symptoms that I do not have any children of my own. However, in my early 30s, I met a wonderful woman who happened to already have two children. We dated for a couple of years before we moved into a house together, and the four of us made for a nice little family. We married a few years after that and have been together ever since.
From the outside, it looked like I was leading a normal, productive life. It’s not that I wasn’t impacted by CF, it’s just that the symptoms were only slowly worsening and, for a time, I was able to live with them. Until I was not.
One day I had to be transported to the hospital from work via ambulance, as my coworkers became concerned that I may be having a stroke. I was showing signs of lack of oxygen — I was lightheaded, my left arm felt numb, and I was confused and slow to answer simple questions. Once in the ambulance, the EMTs gave me supplemental oxygen, and I recovered pretty quickly. I believed I was dehydrated from sweating while shoveling heavy, wet snow the night before. The doctors said I must have had an anxiety attack, so I was discharged from the hospital with a handful of Valium and advised to rest for a few days.
Another incident happened while I was in Taiwan. I developed vertigo that wouldn’t go away for two days. I tried to get hydrated and restore my electrolytes with sports drinks, but still the world around me felt like it was spinning. My Taiwanese friend tried a traditional Chinese medicine technique on me that targeted a chi point on the back of my neck, which finally cleared that sensation.
There were many isolated incidents like this, but it wasn’t until a certain symptom developed that I began to be really concerned: chronic pancreatitis.
It began when I noticed a constant pain in the center of my back when I was 30 years old. I didn’t feel it in the front lower area of the rib cage, where the pancreas is located, but near my spine. At first, I assumed it was muscle strain, but it did not go away for months. At my annual physical that year, I asked my primary care provider about it, and he suggested I try a nonfat diet for one week to see if it went away. Sure enough, by the end of that week I had no more back pain. So, I modified my diet and things went along normally for about the next 15 years or so. Whenever I started to feel that pain again, I’d take notice and return to a strict low-fat diet.
And then, one day around Christmas, that pain became so severe I needed to be taken to the hospital. I spent five days there on heavy pain medication and an IV, letting my digestive system rest. Even on the ride home at the end of my stay, the pain from my inflamed pancreas was still excruciating with every bump in the road. It took weeks to recover as we began to search for answers as to why my pancreas was inflamed.
At first, we thought there might be something wrong with my gallbladder, and while imaging didn’t show any stones, the fluid that flows out of the gallbladder was gunky. I decided to have the organ removed just as a precaution. I also limited my alcohol intake, since alcohol abuse is one of the most common causes of pancreatitis.
Eight years later, the day after Thanksgiving, I awoke with the familiar back pain. This was 2020 and hospitals were full with COVID-19 patients, so I tried to wait it out at home. Unfortunately, I needed to seek help at the hospital the next day. After this, I stopped drinking alcohol entirely and modified my diet to a maximum of 10 grams of fat per day. While I would miss having the occasional beer and a cheeseburger, I happily adopted these lifestyle changes in order to keep myself out of the hospital.
And then, four years later, I was again at the hospital for pancreatitis combined this time with colitis. At this point, I was diagnosed with idiopathic chronic pancreatitis, which means I was prone to pancreatitis, but they had no idea why. But in the series of tests, I was finally able to get a genetic test, and lo and behold — I have cystic fibrosis.
When I received my CF diagnosis, I was surprised and yet relieved to finally find an answer to a lifetime of issues that were getting worse over time. More and more often, my shortness of breath would cause me to have to stop and rest while doing even simple yard work. I had learned that drinks with added electrolytes could help avoid vertigo and other effects of dehydration. I started using a steroidal nasal spray to limit headaches from sinus inflammation. I had been hospitalized for pancreatitis a number of times even though I had my gallbladder taken out and had given up alcohol years ago.
I am grateful for the diagnosis, which now enables me to receive the proper treatment. I don’t blame myself or any of my doctors for not putting the pieces together earlier. I have been lucky enough to find an answer, and I cherish every single day I have with family now. Each one feels like a bonus day. Another day to enjoy that I may not have had were it not for good fortune and incredible advancements in medical science. I am eternally grateful to the Cystic Fibrosis Foundation, the caring and observant doctors and nurses, brilliant scientists, and brave patients and their families who forged the path before me and without whom I would not have this opportunity for a new lease on life.
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