Amanda Turkiewicz

My experience with Respiratory Rehabilitation

My experience with Respiratory Rehab

The doctor's at St.Michael's CF clinic are not afraid to be innovative in their patient care. My disease has progressed to a level which meets most of the criteria for transplant assessment and listing. Cystic Fibrosis presents itself in individual ways, however, and sometimes the usual criteria are not enough to warrant status quo decisions befitting another patient. After recommending the use of a pedometer to analyze my slow decline into a sedentary life, my doctor and I agreed that I needed to start getting more exercise. She recommended me to a respiratory rehab program typically used by COPD, and other acquired-disease patients of an older age.

In the time I spent in rehab I learned ways to manage everyday living while I was gaining muscle mass and endurance. Difficulty was increased slowly, and much attention was given to my oxygen saturations, heart rate, blood pressure, and subjective perception of shortness of breath (BORG scale). Watching how they monitored me, as well as the way others were monitored, provided me with a baseline idea of how to know at what level a person with lung disease should be working when trying to stay in shape.

The ultimate outcome of this program ended up having more benefits than even the doctors could have predicted.

- It decreased my anxiety (currently treated with medication) around exertion in public. Now, when I get short of breath or light-headed, I think about what I can accomplish in rehab and can reason with myself and believe that a simple walk through the mall will not kill me. I can pace myself and limit the symptoms that trigger the anxiety when or before they occur. One thing I have discovered, is that a major source of my symptoms is trying to match the pace of my healthy, young husband. Such a small detail that goes unnoticed until you are taught to watch for it.

-Working out to my best potential has eliminated a fantasy of mine in which the transplant exercise program would improve my FEV1 such that I could work my way off the list after i had gone on it. Although this program has strengthened my body, my lungs remain in the same zone and all illusions have faded about getting any more lung volume via exercise.This has taken a load off of my mind because now I know that when I list, it is for good. There is comfort in definites in this disease.

-I am now in a position to mirror what I have learned until I do list for transplant in the form of my own structured workouts at home. Instead of starting the wait for lungs in a risky and weak state, I can confidently enter into it with a body that is ready for major surgery.

I believe that somewhere in the timeframe where a young person goes from functionally deficient lungs to severely impaired ones, we lose the ability to assess how hard to push ourselves each day. Depending on the individual, this may mean that we overdo it (such as taking on overtime at work, or not getting enough rest) or underdo it (such as watching tv or spending time on the computer most days). For me, I actually did a little bit of both but ultimately landed in the "underdo it" category shortly after it was recommended that I quit working 5 years ago. 

Michelle Matta