In late 2015, David had been training hard for his eighth Iron Man, when he started to notice a decline in his progress. He had always loved long distance triathlons, but for some reason the training was becoming difficult and unenjoyable. Then, during one swimming training session, his hands began to swell to an unbelievable size. His training partner convinced him to go to the emergency room, where the doctor fixated on his hands. But a variety of tests later led to a diagnosis that would change his life.
On December 23, 2015, David’s healthcare providers diagnosed him with systemic sclerosis scleroderma. This chronic condition involves the hardening and tightening of skin and connective tissues, and as it progressed, was not only causing swelling in his hands, but also problems for his internal organs, especially his lungs. His doctors soon determined he had several comorbidities as well, including Sjogren’s Syndrome (which causes dry eyes and mouth), Raynaud’s (a condition in which some areas of the body feel numb and cold) and Interstitial Lung Disease (progressive scarring of the lung tissue).
Because little was slowing down the progression, David was approved for a stem cell transplant in February 2017. “That is what really turned things around for me,” David explained. Some of his comorbidities disappeared, and he began to regain lung function. “I was out riding my bike again at first, but then my lungs started getting worse again. So, my doctors suggested an oxygen concentrator in a backpack unit,” David said.
Unfortunately, even though he felt stable, he wasn’t. His lungs continued to decline. And on one plane trip, when he was descending the skywalk, he passed out from inadequate oxygen. He landed in the hospital where his healthcare providers decided he needed to be on oxygen 24/7.
Adjusting to a Life with Oxygen
Since that fateful day in April 2023, David has had to change his very active lifestyle to accommodate his new dependence on oxygen. Whenever he is at home, David is attached to an A50 foot hose that is connected to A2 parallel concentrators. This allows him to get around the main floor of his home and down to the basement. But if he needs to leave the house, even just to run errands, he has to take giant E size oxygen cylinder tanks with him. “I am tremendously restricted,” he said. “I have been gradually dialing up my usage and, now, because my oxygen usage has grown to such an extent, my baseline is 10 liters per minute. So, for instance, if I want to go out and walk up and down the street, about a 1/4 mile or so, I have to set my tank a bit higher (to 12 or 15). One of these E-tanks barely lasts an hour at that rate, so I can’t go very far.”
Despite the medication and oxygen, David’s lungs continue to deteriorate. He is now being considered for a full lung transplant at Cleveland Clinic, even though his age group is rarely approved for such a procedure.
Working for Oxygen Reform
Shortly after he was put on continuous oxygen usage, David learned about liquid oxygen and thought it might be a great fit for him. His usage was high, and his tanks were cumbersome making it hard for him to leave the house much, so he decided to go out and buy some liquid oxygen equipment himself. Unfortunately, he learned Medicare had discontinued/changed the reimbursement for liquid oxygen and so the manufacturers found that it was no longer profitable to give liquid oxygen to individual users, only larger healthcare facilities.
Frustrated, David decided to fight for change. He became part of the American Lung Association’s legislative efforts, going before representatives of Congress to promote the SOAR Act. “I spoke to congressional representatives about supporting this legislation so that we could get liquid oxygen. I explained that four or five years ago there were about 42,000 users of liquid oxygen, now there's less than 8,000 users and not because we don’t need the liquid oxygen but because of availability,” he explained.
“They don’t realize the consequences of their actions, which harm thousands of individuals who are dependent on oxygen, so really have no choice in the matter,” David continued. For now, David continues to lug around his gigantic green tanks just to walk up and down the street, trying to keep up an exercise routine that will improve his lung function, but being limited by his circumstances.
Access to liquid oxygen would be life-changing for David. “I just want to be able to do simple things like go to the store or go out to dinner without worrying about my tank running out. As it is, I can’t do these things outside the home at all. So liquid oxygen would improve my quality of life a great deal.”
Learn more about the SOAR Act and how you can get involved in supplemental oxygen reform.
Blog last updated: October 8, 2024
