On some days, the motivation to pedal a stationary bike and feel the burn and breathlessness for 20 straight minutes is buried under a layer of mucus lining most of my airways.
Pulmonary rehab five days a week has tuned my body so that I can dramatically feel the weakness in my muscles when I have more lung congestion on a particular day. But I still don’t feel “sick enough” for a transplant.
On those days, I feel discouraged and frustrated about having a pair of crap lungs. I have to dig deep for the stubbornness I typically employ by pushing my body to prove that my lungs aren’t near the end of their capacity. This thought process gets me through my workouts, but it’s also dampening my desire to get listed for new lungs.
I’ve been exercising like this since the beginning of June, when I relocated to be near Duke University for a lung transplant. I’ve learned just about everything there is to know about what to expect after surgery, as well as about the medications and longer-term care.
I’ve made friendships with fellow transplant recipients who are going through this at the same time. I also enjoy the amusing company of fellow rehabbers, who often refer to me in a parody of the Rihanna song lyric: “Ella, Ella, eh, eh, eh, under my umbrella.”
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One of these acquaintances recently asked whether I used to be a swimmer because I have the physique of one. This got me thinking.
I’ve never been an athlete, but I think I’ve always looked “healthy.” I put this in quotations because it’s relative. I think this outward perspective fuels the illusion — and my delusion — that my lungs are much healthier than they actually are.
When I see the fitness level of most others in the rehab gym, I feel like I am not as sick as I should be to get a transplant, despite using 4 liters of oxygen while riding the stationary bike. I am able to push myself to go to the beach for the weekend or to attend my friend’s wedding without using my supplemental oxygen throughout the day (although I shouldn’t).
I don’t take into consideration the amount of effort required or how much help I am receiving. My mom does all the daily household chores, and my boyfriend carries bags whenever I go somewhere, so I only have to haul the weight of my own body. My body is doing less and less, yet my mind doesn’t feel equally limited.
This mindset is beneficial when I am pedaling to reach the 3-mile mark. It’s detrimental when I decide to climb a flight of stairs without oxygen and feel like I may pass out. And it’s an influence on my decision to hold off on actively listing for transplant now.
Hopefully, within a month, I’ll get access via compassionate use to the new Vertex triple combo medication, which is anticipated to dramatically improve lung function. I’m hopeful that it will restore some of the lost steps on my health ladder from last winter’s decline.
Knowing that the medication may soon be available, along with my fear of what awaits post-transplant and my need to push my body as far as it will take me, I have decided to hold off on actively listing until I can try the medicine to see if it improves my lung function. I try not to be overly optimistic about its potential or oblivious to the reality that if I suddenly get very sick, the option of a transplant may be taken off the table.
Will this medicine just buy me a few more months, and will that be worth the upheaval of moving back and forth to Durham, North Carolina? What will my threshold be for determining whether I have improved enough to have reduced the risk of a severely catastrophic event if I don’t list?
It will be difficult to decide when the ideal time is to list. I want my mind to be ready for the transplant step. I’ll trust my gut on what’s best, knowing that many have gone before me with these same conflicting thoughts.
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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