Living life with CF is challenging enough in itself. Adding in chronic pain adds a level of complexity and challenge both physically and emotionally that can be a real game changer. In the winter of 1995/96, I had a traumatic fall while skiing and found out almost 12 years later that I had broken my back.
Over the past 19 years, I have used exercise, physical therapy, chiropractic care, acupuncture, pain medicine, anti-inflammatories, and muscle relaxers to prevent the intense spasms and nerve pain that has landed me on my back and in my bed for up to weeks at a time. This happened again, and hopefully for the last time, over the past 5 weeks. It was one of the most painful episodes I have had, landing me in the Emergency Room for the third time in two decades.
In the fall, I fractured my T-12 vertebrae, and also herniated the discs between T-11/12 and between L-4/5. While the latter is common in people, it is not always that it results in pain. For me, the pain is mild to moderate on an average day, and beyond severe other days. There are surgical options for this, but I have never considered that, because I could never fathom how I would recuperate from back surgery while having to shake twice a day doing Chest Physiotherapy (CPT). The two just didn't add up. So I have lived with the pain, and done my best to manage it through conservative treatments including exercise.
Cycling, swimming, and believe it or not, snowboarding are amongst the most beneficial activities for my back. Yoga, pilates and vertical hiking also is very beneficial, but have also occasionally contributed to exacerbation.
Exercise has always been critical for me not only for clearing my airways in addition to my CPT, but also in expanding the airways for helping to prevent mucus plugs from lodging in my lungs. But additionally, it has been preventative in keeping my back strong, limber and oxygenated with maximum blood supply. I believe that exercise helps minimize inflammation in my joints, back and lungs and also contributes to a strong immune system.
When my back goes out, and I am debilitated in bed, I get severe anxiety that my lungs will begin to suffer, my joints will start to ache, and my proneness to getting sick increases significantly. Many times I have said that this back pain weighs so much more heavily on my life than CF. If I could ever get out from under this pain for good, I would do what it takes.
Now, I may have that chance thanks to Vertex and the new Kalydeco/Lumacaftor combination therapy for people with double-DeltaF508 (homozygous) cystic fibrosis.
Last year I was participating in the blinded study for this new and potentially life-changing medication. This April I was able to begin on an open-label part of the study where there is no placebo group, and everyone involved is on active medicine. The impact felt in just the first several weeks has been enough to give me goose-bumps just typing about it.
While I have been fortunate enough to maintain a lung function in the mid-80th percentile, I am thrilled to see improvement just in the first two weeks of active treatment. But my lung function is ironically not my biggest debilitation - my back is. Being on Vertex's medication, even though still in study, and hopefully to be approved by the FDA in the coming few months, gives me potential to have back surgery to correct the cause of pain in my back, and maintain stable lungs while healing from surgery.
To consider the idea of a life without back pain, and a life with more normal lungs from Kalydeco/Lumacaftor combo creates a hope SO great for me and so many others, including my older brother; A hope for a NEW LIFE on the immediate horizon!
Next Tuesday, May 12th, I will have the exciting opportunity to go testify to the FDA Public Hearing Panel who will make a recommendation of approval or denial of Kaleydeco/Lumacaftor combo for the DF508 population. I am honored to have this opportunity to share not only the prospect it holds for my life and the thousands of others with DF508, but for the countless future patients who could face a life with less hospitalizations, less scaring of lung tissue, more normal mucus viscosity, more normal lung function, and more normal lives and life spans.
I also believe that approving this new life for the primary population of people with CF would only bring the remaining ~15% of people with various CF populations to face such a new life as well, and consider a life of activity, exercise and adventure just for the FUN of it, instead of for part of their survival.
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Brian Callanan is currently 38 years old, and was diagnosed with cystic fibrosis at birth. He is the Founder and Executive Director of the CFLF, and practices an active lifestyle primarily through swimming and cycling on and off road. You may email him directly at brian@cflf.org.
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