How triathlon training has helped one reader manage his primary immunodeficiency disease.
It’s normal to be sick a lot. Right?
As a child, when summer break was just around the corner, we would start our long trek from Dallas, Texas, to my grandparents’ place in Oregon. I loved going to my grandparents’ home because they lived in the country where we were free to explore all day long and I could shoot my BB gun at all kinds of fascinating things.
If only I could stay healthy!
But that was not to be. As in every vacation past, every trip ever planned, I was sick! In all the pictures of our vacations, every Christmas — you name it — I look pathetically sick.
From the time I was 2 years old, I came down with some type of bronchial illness at least twice a year. They weren’t just simple “colds” or the flu that soon passed; these were bouts that settled in my bronchi and lasted two or three weeks, and included walking pneumonia, ear infections, and digestive problems. My doctor blew off the digestive problems as relating to milk intolerance. My mom tried to keep anything that might trigger an allergic reaction from my diet. Instead of progressively growing out of them, the bouts of sickness became more severe and I became perpetually more tired and lethargic over the years.
I remember our family doctor giving me vitamin B12 shots along with a dosage of antibiotics. I rocked along with prescriptions of antibiotics and B12 throughout my school years. I often couldn’t sustain enough energy and missed so much school it was difficult to keep up with my classroom work, let alone have the energy to play sports. I seemed to catch every infection that came along. We accepted this as my norm and hoped I would outgrow it.
The Tipping Point
My daughter was born the year I turned 30, and by that time I was perpetually sick. I would attempt to exercise in the times I wasn’t sick, only to bring on another round of illness. My life was a battle of trying to be well. I was on antibiotics, steroids, inhalers, nebulizers, allergy meds, and nasal spays — just about any medicine my doctor could think of. He sent me to all the specialists and each had their own diagnosis: COPD, asthma, acid reflux, allergies, etc. Each of them in turn prescribing more medications for each diagnosis.
As a graphic artist, I could work from home, so I struggled with trying to manage sickness, my responsibilities as Dad for our little girl, and my workload. In addition to the physical distress my body was in, I was also beginning to have vision problems in my left eye that required surgery. This ultimately deteriorated over the next year leaving me without sight in that eye.
Then my doctor told me I was allergic to everything in the Dallas area and that we needed to move so I could get well. So, in search of better health, we moved to Highland Ranch, Colo., where I took a full-time position with one of my clients.
Seeking a Cure
In the first two weeks of the move, I developed a detached retina. Several surgeries later, I was told, “You can either live with being able to sense a bit of light with that eye, or have it totally blacked out.” The retina just wouldn’t heal properly. I opted to keep what light I could see.
After that, I met my new allergy and asthma specialist, who I later learned was Kaiser Permanente’s top immunologist. He told me that I didn’t have asthma, allergies, or any discernible problem in those areas; rather, it was that my immune system wasn’t working properly and was causing my body to present as if I had all of these other issues. This was why I couldn’t fight off infections or heal properly. The move to Denver was a Godsent. Finally, I might have an answer.
My physician began with the process of elimination to rule out autoimmune diseases and cancer. Emotionally, it was a roller coaster — waiting for the phone call each time I was tested for a disease, thinking this could be the answer and that I could get well. Test after test, up and down, I would tell myself, “Whatever it is, we can beat this.”
The initial blood results showed below normal IgG and almost no IgM and IgA — essentially, that my body was not making the antibodies needed to fight infection. Because there are many things that can cause a “suppressed” immune system or a secondary immunodeficiency, the doctor tested away, ruling out one thing after another. At the end of this list was primary immunodeficiency, in which the genetics of one’s own immune system just doesn’t work properly.
I was finally referred to Colorado University Hospital for the Titer Challenge Test, where they inject you with several vaccines and see how your body responds. After three weeks, I returned to see if my body did anything. The normal response is an increase in antibody titer. My response was across the board negative. I did not have any increase in antibodies. The diagnosis could now be confirmed.
I remember sitting on the stairs when my doctor called with the verdict. Still hopeful when the phone rang, thinking “no matter what, I can beat this!” Then I heard words like Primary Immune Deficiency (PI), Common Variable Immune Deficiency (CVID), genetic, not curable, lifestyle changes, and some success managing with IvIg (intravenous immunoglobulin) every three weeks for the rest of my life. After communicating the diagnosis to my wife, I began thinking, “I can’t beat this.”
I have a rare Primary Immunodeficiency called CVID, a genetic inability to fight infection. No diseases to fight, no treatment plan to cure me — nothing but the unknown.
In many ways, the year following diagnosis was harder than before. I was still getting sick every quarter; still on all kinds of meds, and worse, I was experiencing major fatigue and sickness from the Ig infusions. My day consisted of working for a couple of hours and then crashing on the couch watching the world go by. The emotions of helplessness were real and I had to fight off depression. People around me didn’t get it. They thought I had AIDS or gave me the “you don’t look sick” verbiage.
After Treatment, the Training
The tipping point came as I was tucking my 3-year-old daughter into bed one night. She looked up at me and asked, “Daddy, when are you going to be sick no more?” I walked back downstairs completely devastated because I couldn’t tell her the truth: never. My wife was sitting there trying to figure out what she would do because her triathlon training partner was pregnant and taking a year off. Totally without thinking I blurted out that I would train with her. I had no energy to do it. I had nothing but desperation.
To my surprise she took me up on the offer. I guess you could say she called my bluff. That’s when I got started taking my life back.
That first triathlon with my wife was a sprint-distance race and I only had 12 weeks to train. To go from never swimming to 500 meters, from not having run in 15 years to running 3 miles, and from not having biked since middle school to 12 miles was a leap.
The Run: My first training run was one-quarter-mile loop around the park. Wheezing and gasping for air, I went out too fast and crawled back to the house in extreme pain. Over time my wife had to teach me how to slow down and just do what I could do.
The Swim: I faced my greatest challenge in the pool because my lungs were in bad shape from all the infections. I could learn the mechanics of swimming, but I had little control over having asthma attacks in the lake.
The Bike: I started out riding a mountain bike on a 3-mile loop with my wife pulling our daughter in a trailer behind her bike. Dragging behind them so often, red faced, lungs burning, and gasping to breathe, was humiliating.
In those 12 weeks of training, I spent three weeks with bronchitis, three weeks with a sprained ankle, and all 12 weeks in pain. I figured if I had endured this long being sick, I could endure the pain of training. I thought, “If I’m going to be in pain, I might as well be the one in control of it.”
Inspired to Race
Ultimately I found my “MyBetter1” inspiration through social media. Running with my wife and daughter on her bike. Biking with my daughter in tow. Swimming laps at the pool with my family. Life began to look better.
I felt horrible after I made it through my first race. I showed up exhausted and fatigued for the race; which is nothing I could control. My body decided to be fatigued that day. But I finished and crossed the finish line side-by-side with my wife. That was a great high!
In that first year, I also found my great low. Two months after my first race, I attempted my second triathlon, only to be pulled out of the lake because of an asthma attack. Humiliated, depressed, and angry, I had to decide if I would take this as a message to quit and not push my body or learn and become better. Ultimately, I made the choice to continue to find my MyBetter1.
Things started to click with me. I would never reclaim who I was, but I could redefine who I was going to be. I could function well after 34-plus years of being chronically sick. I could do more than just get through each day. My body wasn’t better. Emotionally, I was better. My will to fight was alive! I knew I would never be normal, but I could function more than just hiding and hoping I didn’t get sick.
As I began to learn about triathlons and apply those principles in my day-to-day life, I began to have a tool to combat my body. I got into triathlons trying to feel better and found I was better. For those with chronic illness, it takes the same amount of energy and focus to train for a triathlon as it does to do simple day-to-day tasks, like the dishes. Every action we take is a struggle and a physical toll. But eventually I learned that if I put an hour into exercise, I got two more good hours for my day before I crashed. When you are constantly reaching for more energy, that’s a great return on your investment.
Since then I have gone on to complete several more triathlons and two Half Ironmans. Nothing has been easy. I had an asthma attack on a swim and was pulled out of the water by the rescue team. I had another asthma attack in a subsequent race, but this time I was prepared for it. I quickly backstroked to a kayak, hit my inhaler, waited a couple minutes, and soldiered on. Training with a chronic illness is a carefully architectured plan. It sometimes resembles a delicate balancing act because my body does not heal right, lacks energy, and needs extra care. It’s not been easy, but the benefits to my family and my life expectancy make it worth it.
My Place of Better Health
Five years after my first triathlon and under the excellent care of Joann Lin, MD, at McKinney Allergy & Asthma Center, my lung function is above normal. I no longer have regular asthma attacks, and I don’t need the inhalers as much and don’t wheeze unless I am extremely ill. My incidents of infections are way, way down. To achieve this improvement I have done more than just exercise. I have embraced the triathlon way of proper eating, sleeping, recovery, stress reduction, and more. I have also learned by educating myself on my illness and understanding its adverse effects to my body.
I am currently training for my first full Ironman in Louisville, Kentucky, happening on August 24. I still encounter more bad days than good ones and have to pull the “Dad doesn’t feel well” card more than I would like. But I am better. I still lack energy, feel fatigued, and find my body just shutting down. Along with that, there is the depression of living with a chronic illness to fight, germ exposure to watch for, and a list of symptoms that still exist if not kept in check through lifestyle choices. My genetics cannot be changed. But I don’t want sympathy. I don’t want to be remembered as Poor Sick David. I want to be remembered as a person who achieved his best despite his weakness.
If through finding MyBetter1, I can encourage others with PI to find theirs, it is all worth the trip. It has made me a better husband, father, and friend, and taught me to be proactive about proper eating, exposure, and rest. My motto when having a bad day is to say, “Stop waiting to feel better. Do something to be better!”
Along the way, I developed the website TriForBetter.com to inspire, encourage, and equip those with Primary Immunodeficiency to find their “better” (MyBetter). It is an online venue for those of us with genetic, noncurable disease to encourage each other and share our stories. We hope to inspire all we come in contact with to “TriForBetter”; whether it be someone with PI or your average Joe who just needs to get moving.
Don’t wait to feel better. Do something to feel better. Those who do not have a chronic illness can wait until tomorrow to feel better. Not so when you have CVID or other immune deficiencies. It takes being proactive every moment, every day.
For more information: Primary immunodeficiency (PI) diseases are a group of more than 250 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly. While not contagious, these diseases are caused by hereditary or genetic defects. Some types affect a single part of the immune system; others may affect one or more components of the system. To learn more about PI, please visit www.primaryimmune.org/about-primary-immunodeficiencies. —David