One of the most challenging realities I face with chronic lung disease is that my only option to feel better is to continue with treatments. There is no cure to make it all go away. Instead, I must choose to say “yes” to treatments, taking medications, self-monitoring via multiple medical devices, and using a combination of oxygen therapy and noninvasive ventilation. I choose to manage my illness with treatments in the hope that I’ll feel better and the disease’s progression will slow down. However, “treating” the condition can be exhausting.
Each treatment takes a lot of getting used to. Adjusting to a new medication takes mental and physical energy. I have become adept at patiently waiting to see how my body will tolerate an increased dose or a new therapy. Dealing with medication side effects is emotionally overwhelming. I think, “Will these symptoms get better? Will I always feel this way? Why should I take this if it’s making me feel worse?”
When taking a medication, I remind myself of the reasons my doctor thinks it will help me. Knowing the potential long-term benefits helps me choose to take it in the short term. I have also learned that the more severe side effects are usually temporary.
Aside from medications, I have to adjust to new medical device equipment. When I began oxygen therapy three years ago, it changed what I could physically handle during the day and how I spent my days. It took me over a year to adapt to a routine of checking that my oxygen tanks were charged, bringing backups with me, and switching the flow on.
While it took time to accept that I need oxygen, I know the benefits of wearing it. Some days I struggle more than others. I would be lying if I said I was accustomed to looking at myself in the mirror while wearing my oxygen. However, I know how terrible I feel without it, and that’s enough for me to continue saying “yes” to this treatment.
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Then I was introduced to a new treatment: I now need noninvasive ventilation for a few hours during the day and overnight. I have taken baby steps toward using it as precisely as I should. This treatment has overwhelmed me; the machine reminds me of the hospital and triggers feelings of being trapped, helpless, and defenseless. It puts my post-traumatic stress disorder into overdrive.
I know that without the machine I risk having episodes of sleep apnea, an oxygen saturation drop, and carbon dioxide retention. Talking about my fears with my therapist has been helpful. Getting support from the respiratory therapist has also helped me to understand this treatment better. I will find ways to incorporate this treatment into my everyday life, and then it will become just another part of managing this disease.
I often feel I don’t have many choices in my life with a chronic illness. I didn’t choose the medications I take, the need for oxygen and a ventilator, nor any of the emotional and physical symptoms I experience. I don’t have control over any of this. But I do have control over choosing to say “yes” to treatments, medications, and medical devices to live as well as I can.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.