Describe your life prior to diagnosis:
In 2009, I was hospitalized for an unknown illness that had taken its toll over the prior 3 months. I had been at the top of my professional career, working two jobs, 80–100 hours a week, had many hopes and dreams, and loved every minute of it.
Then it came crashing down.
I barely weighed 110 pounds, could not walk without leg braces and crutches, and spent a lot of time in a wheelchair. I needed help to get out of bed, get dressed, even to go to the toilet. Oxygen tanks and buzzing machines for apnea surrounded me. I developed a life-threatening heart arrhythmia that was the last straw and put me in the hospital. I was dying, plain and simple. I remember thinking that I wouldn’t reach my 50th birthday, but strangely enough I didn’t care as I was just so sick and miserable.
Several months of hospital stays followed, including over 20 times to shock my heart back into a normal rhythm. Right before Christmas I suffered a cardiopulmonary arrest at home. My wife performed CPR and revived me from lying lifeless on the floor next to my bed.
How did you come to know (or suspect) that you have celiac disease?
The source of my illness was unknown at the time and treatment options in my hometown were exhausted. The best doctors simply didn’t know what I had or how to treat me. So we began a snow-packed, icy drive to the Mayo Clinic in Rochester Minnesota. I will never forget that drive. I had lots of time to think, but I never felt nervous or worried the entire trip, as if guardian angels were guiding the car every treacherous mile.
(We spent a lot of time at Mayo, but fortunately we were able to stay overnight with two of our best friends. I remember telling him that it would be too much trouble to coordinate all the oxygen equipment at the house. He would hear no such words. When I arrived, very sick, they had a special room prepared for me, and all the oxygen equipment and supplies were sitting there ready to go. I don’t know how they managed all of that, but having a bed to sleep in at your best friend’s house instead of a hospital or hotel bed is a comfort that is beyond description. I am forever grateful.)
I was so tired of tests, pokes, needles, biopsies, shocks, and procedures that I couldn’t imagine going through another one, but what followed was three weeks of an intense round of evaluations, testing, and procedures at the Mayo. Their first priority was to try to fix the heart.
We endured a 13-hour heart operation to fix the damaged electrical circuits. I’ve seen a lot of amazing medical procedures in my career, but lying there awake for almost two-thirds of it was an amazing and humbling experience. The technology, state-of-the-art equipment, and dedication of those health providers was a small miracle.
I got tearful at one time and the anesthesiologist asked me if I was in pain. I told him no, just thinking about life and how drastically it had changed. He told me that God had plans for me and not to worry. That was a turning point in my attitude toward my illness and will never forget it. He was right.
Eventually, they diagnosed me with a set of autoimmune diseases, triggered by a severe form of celiac disease called refractory celiac disease. I thought, “Gluten? Are you freaking kidding me? Can it be that simple?”
It wasn’t that simple. The disease had probably been there most of my life but some kind of trigger put it into overdrive. My body’s immune system had launched an attack throughout my body, muscles, nerves, gut, skin, brain and heart. A precursor to a rare, untreatable form of lymphoma was found in my gut biopsies. Surprisingly, I wasn’t scared. Challenge accepted.
Describe your experience with living with celiac disease:
I tried experimental treatments. They were terribly expensive and not covered by insurance, initially. That was a hardship, but nothing like the social isolation that took place. Almost everything I did prior to getting sick was ripped away in one form or another. My work, career, friends, social network, activities, hobbies, sense of self worth, ego—you name it—gone.
After another operation on the heart and a trial of high dose steroids, things had improved slightly but the lymphoma precursors had progressed. I spent over a year in physical therapy (PT) to learn to walk again and take care of myself. Daily PT had to start in the swimming pool because I wasn’t strong enough on land.
During that phase of rehab, my own philosophy of never quit, never lose, and always give 110% lead me to tear the rotator cuffs in both shoulders, rupture four discs in my neck that have pinched my spinal cord space in half, damage the nerves to my right arm and shoulder, and develop paralysis of the diaphragm that moves air into and out of my right lung. Those are ongoing daily battles that most people are unaware of to this day.
For one of my other autoimmune diseases we switched to a type of treatment known as gamma globulin immunotherapy. It’s a bit like chemo for your immune system. We hoped it would have an effect on both my refractory celiac disease and lymphoma precursor cells. A number of my friends and family had gone through chemo, so this would be a battle but it would have an end and hopefully a favorable result. It’s good to be able to see the light at the end of a tunnel to help you get through things.
Unfortunately for me, “chemo” has never ended. I’ve done it every 3 weeks for the past 8 years. Initially it was two days of IV “flu in a bottle,” now it’s one long infusion, a 13-hour day.
When I stop to think about it, that is just mind boggling. Although I hope and pray that someday I will have my last gamma infusion treatment when a cure for celiac disease is discovered, it is what it is for now and I don’t really have any big complaints. The alternative simply isn’t acceptable.
My lymphoma precursor cells have gone away for the time being. This particular form of enteropathy-associated T cell lymphoma has a dismal prognosis of less than six months survival time from diagnosis. My form of celiac disease carries a five-year mortality rate of 60%. Well, I obviously made it past six months and blew past my five-year mark. There is much more going on here than science can reasonably explain. Further research is greatly needed for celiac disease and others like me, but I’m gonna take it and run with it!
Is there anything else you’d like to add to your story?
I’m just sitting here in bed taking it easy before my next gamma infusion. Thinking about the past few years and the upcoming Step Beyond Celiac 5K.
Most of my acquaintances and friends knew me before I got sick or after I started some recovery. I let very few people in my circle when I am sick. I’ve always been that way: never let anyone see you down or less than 110%. A lot of people that see me now would never know anything is wrong. That’s the face of an invisible illness in a strong-willed person that never wants to be seen as anything but positive and strong. Weakness is the enemy. But it comes with a price.
That’s part of the reason I am writing this. It’s more for me than for you. It feels kind of good to not be quite so hard on yourself and set realistic expectations, while not being afraid to dream big even though you might fail. In the past, I would never have dreamt of such a crazy philosophy on life.
That one day of energy and smiles that you see was preceded by 1–3 days of preparation and rest and followed by varying durations of “paying for it.” Every battle results in wounds that take a while to recover. And then you have to get ready for the next one. It’s not something you can do every day, or even every other day. My mom jokes that I wasn’t born with frown muscles and have always had a smile no matter what. Returning to work has not been an option in my career and it’s one of the most devastating consequences of this whole damn illness. But how do you fill such a huge void? I can say without hesitation that getting together with a local car club as my health began to improve somewhat is what probably saved my life as much as anything else. Treatments can only do so much. Social interaction and a feeling of self worth and positivity is an amazing healer. Without my connection to my friends, I would be dead by now. No question about it.
Sometimes you have to accept battles to get where you are going in life. I’m not exactly sure where that is, but if these past years are any guide, then I welcome another year! These experiences have brought me to help create the first Step Beyond Celiac 5K. This is about friends, new and old; giving back to community; participating in something bigger than yourself; and setting high goals and reaching them. Thanks to all who are making this happen. Your friendship and support is truly amazing!
2022 UPDATE
My mom remains my biggest fan of all and would gladly accept my illness upon herself if it would make me better. She has a special place in Heaven waiting for her. Mom has celiac disease too, but thankfully not the severe form that I have. Dad has the celiac gene but the disease has not shown itself. My two brothers do not currently have celiac disease.
My forever pets have been our children over the years and have given an immense amount of love and support these past 13 years. Days of lying in bed, just wanting to cry, but those dogs never left my side and the tears would always just dry away. Three of them have gone to Heaven since my diagnosis and now I am blessed with six dogs to lead me through life’s challenges and occasional tears.
First two puppies, Liesl and Freude. They reminded me of the innocence of life and always wanting to have fun with a good nap to rejuvenate the energy. Awkward at times, they are masters at snuggling and just making you feel good. Those puppies have grown up now and I am proud of what they have become.
We rehomed our third mini schnauzer. I can’t imagine anyone giving her up. But their situation was desperate. Her mama cried when she left her but seemingly had no other choice, so she tried to find the best new home she could. I vowed to take care of her forever. She handed me her worn favorite blanket, an old leash, her favorite squeaky toy, and her collar. Those were her entire possessions on this Earth, and she was scared and trembling. It took months before she would stop barking at me. Now she sleeps close by my side, the closer the better, and responds to my every command. She reminds me that no matter what happens to you in life, there is somewhere you can find love and be loved. You just have to stop barking (complaining) and get close once again.
Out of the blue, I received an email about two standard schnauzers that needed a new home. Benny and Tux were being separated from their lifelong owner after she fell ill with dementia and could no longer care for them. Benny was able to stay with her for a while in assisted living. Tux went back to his breeder who looked for their new home. We decided to give it some consideration and met with her and Tux.
I don’t know if you have ever had one of those “ah-ha” moments where you just knew you were meant to be together, but that’s what I had with Tux. Maybe my heart hadn’t completely healed after all. When he came to me and snuggled my chest, I simply felt whole once again. He was so beautiful, so strong, so regal. He became my protector from that moment on. We have since trained for thousands of hours and he scents gluten to keep me safe. He truly makes my life safer and healthier. We go everywhere together and he hasn’t left my side for more than just a few moments in the past five years. He is now 13 1/2 years old.
About six months later, Benny came to join Tux too. Their reunion was special to see. We were told Benny was old, could barely walk, was blind and deaf, and probably wouldn’t live very long. When he was rejoined with his stepbrother Tux, given the right kind of food and plenty of love, he simply came back to life. He wasn’t blind, deaf, or sick—he ran around the yard with us like a young pup again. He got his second chance just like I did. I have learned to appreciate each and every day just like Benny does.
About a year later, he developed a bleeding toenail that was a toe cancer. During the pre-op evaluation, we found a huge separate lung cancer. His toe was hurting and bleeding and we had to do something. I held him closely and prayed for guidance of what to do. After many tears, Benny began to head butt me. Pretty hard actually. He was telling me to stop those tears and fight for him. He had plenty more days to live and love so give him a chance.
Boy, I thought I was tough throughout my various illnesses and procedures. Benny is beyond stoic. He never whined. He never whimpered. He never growled. He simply trusted that I would make him better.
Benny beat the odds just like me. He had a toe amputation followed by a huge chest operation where they removed his entire left lung and the lung cancer. He had four doses of chemo, but it never seemed to phase him. Without the surgery he would have lived maybe a couple of days. Benny taught me that Benny Loves Everybody and Everybody Loves Benny. What an inspirational role model!
Tux also developed a lifelong chronic illness called Cushing’ s disease. If I could, I would take his illness, just like my Mom would do for my celiac disease. That simply affirms that Tux, and all the other schnauzers, are truly my children. I would do anything for them, just like any parent would do for their child.
Another standard schnauzer came into my life about three years ago. Since then, we have shown in dog shows where she has been recognized as a national and international Grand Champion and shown in many dog shows including Westminster.
So this summer, under the guidance of our breeder, who has 43 years of experience, we whelped our first litter of seven beautiful puppies! This litter was carefully planned and parents selected for one purpose: another puppy for me to train as my next gluten detection dog. Bond (007) is now four months old and is well on his way with early training for the job. He represents my hope for my future of living with celiac disease.
Most of all, my wife has been my biggest support of all. It’s easy to forget how much this illness has taken away from her too, changed her lifelong dreams, and pushed her to new limits each and every day. From not having kids to having little hope of early retirement, she has given so much. I have always been good at being a pain in the ass. But this illness brought it to whole new levels. She has been a faithful companion through thick and thin, in sickness and in health, til death do us part…..for the past 31 years. Little did she know the past 13 would have turned out the way they have. I love her more with each passing day and look forward to every tomorrow with her.
Many of you may remember the Kansas City Step Beyond Celiac 5K we did for several years. I was the co-founder of the Step Beyond Celiac events, along with Jilian Hunt and the amazing help of many volunteers, plus the dedicated team at Beyond Celiac. The COVID pandemic shut us down, but discussions are currently underway about restarting the Step Beyond Celiac 5K once again in Kansas City. Other events are also transitioning from virtual to in-person walks and runs across the US.
So here I sit before my next infusion, thinking about life and purpose. That anesthesiologist was right. God does have a plan for me. He pulled me out of the rat race, allowed me to try and enjoy life to the fullest each day, and has given me a set of forever friends and children that most people can only hope for.
Sometimes you have to accept battles to get where you are going in life. I’m not exactly sure where that is, but if these past years are any guide, then I welcome another year!
Thanks to all who are making this happen. Your friendship and support are truly amazing!
