Lifestyle Changes: Trace Cluck
Living with complications from CTEPH has been difficult to say the least. In February of 2019 I had to step down from my position as a Network Systems Administrator and became permanently disabled. It wasn’t a decision I took lightly, and one that I fought for a long time. The reality was that with my diagnosis I would not get better and my health would continue to deteriorate. Due to my commute and the work that was required, I knew that I had to make major changes. At the recommendation of my specialist in Little Rock, Arkansas, I applied for SSI Disability.
Fortunately my application was approved the first time I applied. However, there is a five month wait before benefits will be paid and that has been very difficult. I lost my paycheck and my health benefits meaning that my wife had to cover my health insurance. Her health insurance costs more, and we have a child at home as well. This led to feelings of guilt and depression over the struggle that it has caused. I am someone who has always worked and I was lost as to what to do with my time. I don’t like sitting around, however due to my condition I was being forced to do so.
After many discussions with my wife, we decided that we needed to make more lifestyle changes which would benefit my health and well being, as well as hers. We decided that we wanted to move back to Oklahoma from Arkansas where our grandchildren and our long time friends are. If I was going to be permanently disabled I wanted to be able to spend time with my grandchildren. I knew that it would help me to see them as often as I could. We also knew there were doctors in Oklahoma who specialize in my disease. The doctors at our current hospital were not as knowledgeable as doctors in Oklahoma.
We knew these steps could help us emotionally deal with my illness. We began making plans for a move and my wife searched for a job in the area where our grandchildren are, and also close to my specialists. She was able to secure employment with a company that helped pay for our relocation, which helped tremendously. This allowed us the jump we needed to get settled back in Oklahoma. Once we arrived, we got the referrals we needed to see the doctors here that could monitor my illness. In addition, we both began Weight Watchers to assist in physically dealing with my disease. I knew that despite my illness, I needed to be in better shape mentally and physically to deal with whatever came.
To date, I have lost 20 pounds, my wife has lost 40 pounds, and our teenage daughter has lost 20 pounds. It has made a huge difference emotionally and physically.
We have a strong faith in God, which has carried us through the difficult days, and reminded us that we can still have peace and joy.
Trace is a recipient of the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.