Carla has been diagnosed with Limited Scleroderma, a chronic connective tissue disease classified as an autoimmune rheumatic disease. Scleroderma (literally “hard skin”) is an umbrella term for a family of rare diseases with the common factor being abnormal thickening (fibrosis) of the skin due to the overproduction of collagen. In Limited Scleroderma, skin thickening is less widespread; however, internal problems can occur and in Carla’s case a build-up of collagen continues to thicken her lung tissue which results in fibrosis or scarring, making the transport of oxygen into the bloodstream more difficult.
In the spring of 2015, Carla was tired all the time and had a cough that wouldn’t subside. After several visits to her doctor, she was referred to a pulmonologist. Her condition continued to deteriorate and that summer Carla was admitted to the hospital. After a long stay in the hospital, Carla found a lung specialist at the University of Maryland who tried several different treatments over the past couple of years. During this time Carla continued to deteriorate and increasingly relied on oxygen to accommodate her needs. Her doctor has advised that now is an appropriate time for her to be listed for a lung transplant.
Carla is close to being finished the pre-screening process at the University of Maryland, currently showing her to be a good transplant recipient and in desperate need. Unbelievably Carla has continued to work through this first part of her medical journey. That is about to be over for a bit, although she is likely making arrangements to work from her hospital bed. Carla will incur many expenses above her existing day-to-day costs, and there will be a tremendous financial gap to be filled between the cost of the transplant and insurance coverage.
The reorganization of the new normal for Carla will include organizing and taking up to 40 medications per day, keeping a daily log of her vitals, numerous visits to the doctors and many other burdens, but her new normal will also include the freedom of breathing, traveling, chasing her grandbaby, shopping and spending time with her loved ones.
Carla will not let us share a photo of her with oxygen or reveal her age, but she’s young and looks the same as below- only with oxygen tubes under her nose.