Choosing to Say ‘Yes’ to Treatments Isn’t Always Easy
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.
Brittany, Thanks for this column. I have been struggling with my CTEPH since Day 1, but like you, have recognized the value of various treatments, particularly wearing oxygen when "exerting," which in the past week has become virtually any time I get up, walk around, and do something. It sucks. Knowing that it will only get worse is wearing on me, but the only thing I know to do is keep going. Someone asked me how I was coping, and I told her that I didn't know that I *was* coping, but that I just kept doing my job and the things I like to do; that's how I cope, I guess. Thanks for being a bright light in my darkness.
Thank you for sharing you "choice". My disease has not progressed as far as yours. But I did fight the prospect of using oxygen and finally gave in to my doctor's persistent and patient recommendations. I believe that with acceptance we move forward.
How do you know whan you need oxygen?Sometimes I feel like I need it but not all the time .My Dr.told me when I get up to do anything and at night.Most of the time my oxygen runs in the upper 90s
What do I do to not want treatments? what can I suspect , I am 82 had PH for over 10 years.
I have had asthma my whole life but about 5 years ago my asthma got so bad and I was diagnosed with emphysema/COPD which was most likely due to the asthma. I was on double antibiotics and steroids, still didn't feel any better. I already used Advair, Spiriva, and albuterol in my nebulizer, they just didn't do much. It was awful for me due to the difficulty in breathing, nothing gave me better relief from the severe breathlessness and Wheezing till i started on this COPD Herbal from Organic Herbal Clinic Its been 4 months since i completed the Emphysema Herbal Formula, all my symptoms are gone including constant coughing, i breath very much easier and can never be thankful enough to nature