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In March 2010 I was hospitalized for ten days after a CT scan indicated that I had double pneumonia. When I was initially admitted to the hospital for the double pneumonia breathing tests indicated my lung usage was down to 33% compared to that of the normal range.
I underwent multiple procedures to obtain a diagnosis, including one where over 300ccs of fluid was removed from my lungs. My doctors were having difficulty diagnosing my illness and couldn’t figure out why my body would not heal.
In a period of 48 days in March through May, I spent 20 of them in Freeman hospital here in Joplin and at Barnes-Jewish Hospital in St. Louis. My body had been terrorizing itself and my lung tissue was being scarred due to an unknown lung disease which had caused large portions of both lungs to be unusable.
In May 2010, pulmonologists at Barnes-Jewish diagnosed me with Interstitial Lung Disease. Because I had gotten so sick so fast, doctors told my family that I may not be alive in a year if the disease continued to progress at its current pace.
Since there is no cure and the damage from the disease is irreversible, I was prescribed multiple medications to slow the progression of the disease, put on oxygen, and sent home.
The scarring associated with interstitial lung disease affects one’s ability to breathe and get enough oxygen into the bloodstream; this is why I am required to wear oxygen during any physical activity. To make matters worse, the right side of my diaphragm had paralyzed in an elevated position, making breathing even more difficult.
I was no longer able to work, unable to care for myself, and couldn’t carry, play with, or care for my three year-old and infant sons. I spent most of the next year in bed while we tried to clear my lungs of infection. A year later I reached my peak lung usage around 47-50% and slowly started being able to do more things as the days and months passed.
Finally in November 2010, I saw a rheumatologist because my bloodwork was indicating abnormal muscle enzyme numbers. It was after the visit to that doctor that our family found out the reason that my lungs were diseased.
I was diagnosed with Polymyositis, a muscular disease that shares many characteristics with autoimmune disorders, in which your immune system mistakenly attacks your own body tissues that also has an unknown origin and has no cure. The Interstitial Lung Disease is a direct associated condition of Polymyositis.
Over the past five years, I have slowly been able to push through the daily pain caused by these diseases and the debilitating weakness they cause. Little by little, I started to involve myself in volunteer activities because the effects of the disease had been taking a toll on my mental well-being.
I also needed to be as physically active as my body would tolerate in order to lose a large amount of weight. When I was first diagnosed in 2010 I weighed 407 pounds and I needed to get down to 255 pounds. Doctors advised me to lose weight in order to relieve some of the pressure the extra pounds were causing and to get me to a manageable weight in order to qualify for a double lung transplant and be placed on the transplant list.
In February 2014, I began to walk in local 1 mile “fun runs” because my body was beginning to feel better and tolerate additional activity. My first official 1 mile walk took 33 minutes.
As I increased my physical activity, walking in 1 mile events, I started to lose weight and see an improvement in my breathing. Since I got sick I have lost 80 pounds overall, 40 of which have been in the last year since I started walking consistently.
In the fall of 2014 I decided that I wanted to walk a 5K and that my first would be the Joplin Memorial Run 5K on May 16, 2015. As that day got closer, I knew that I wanted to continue doing more 5K events and signed up for several throughout the year, including the Armed Forces 5K the week after the JMR event. I wanted to walk in the event to honor all of my friends and family members who are currently in the military or who have served in the past. They and all the other servicemen and women are truly heroes.
In addition to starting to walk, I wanted to be as involved in my children’s lives as possible before the effects of my diseases kept me from doing so. I started volunteering as a soccer, tee ball, and baseball coach, adding other activities as my body would handle it.
Then I became a member of the PTO at my oldest son’s school and classroom helper for several teachers; volunteering with the Webb City Bright Futures at the school district level packing weekend snack packs and at other various activities; at two elementary schools on their Bright Futures committees, which included being a Cardinal M.U.S.C.L.E. (Men Using Support Compassion and Love to Encourage) door greeter at Webster Primary; and teaching at my church, Christ’s Church of Oronogo, on Wednesday nights and Sunday mornings.
This year I decided to volunteer at running/walking events, including the Y’s Armed Forces 5K, in order to encourage participants and hopefully inspire others who think they can’t walk to get up and do it.
God has given me an opportunity through my illness, pain, and suffering to glorify him in all that I do. He chooses all of us to be a vessel for his work in some way, and my use has come from being strong through the sickness in my body. With the support of my family and friends over the past five years, I have been able to take the circumstances God has placed me in and serve others.
Walking and being a volunteer are now part of my everyday life and I truly hope that I can help others overcome their own struggles with what I do.
It has now been five years since my health problems began, and with God’s help I have outlived the initial one year diagnoses. The lung disease is now progressing at a very slow pace and the need for a double lung transplant looks to be way off in the future somewhere. Hopefully I can continue my everyday activities, living the life I am able to, and I won’t ever need the transplant.
(David is 38 and lives in Webb City with his wife Naomi and two sons, Noah and Caleb. David and Naomi will celebrate their 10th wedding anniversary on June 30.)