Diagnosed with a rare lung disease and waiting for a transplant, Sheryl finds strength through structured exercise and the support of fellow patients.
Struck by severe lower back pain that just wouldn’t go away, Sheryl Bouwman went looking for answers in the fall of 2014. Unsure of the cause, doctors sent Sheryl for a range of blood work, x-rays and a CT scan, which six months later led to a diagnosis of idiopathic pulmonary fibrosis (IPF) — the most common form of interstitial lung disease.
An umbrella term for a large group of rare disorders that affect the tissue and space around the air sacs of the lungs, interstitial lung disease can cause scarring and stiff ness in the lungs, making it more and more difficult to breathe as the disease progresses. At present no cure exists, leaving newly diagnosed patients and their families understandably fearful. While there are some treatments that help to slow progression, prognosis is generally three to five years.
In terms of improving quality of life, pulmonary rehabilitation is one of few therapies known to help. It was the first thing Sheryl’s doctor suggested upon diagnosing her IPF.
“Dr. Ervin called Ridge Meadows Hospital in Maple Ridge right away and got me into their pulmonary rehab program almost immediately,” she said.
Once in the program, Sheryl learned to reduce her symptoms through exercise, diet modification and breath training. Best of all, she did so alongside other patients facing the same challenges.
“Going to my pulmonary rehab group, I didn’t feel quite so alone. I met wonderful people coping with the same disease and with the same fears and frustrations. We were able to laugh, share stories and support one another.”
Ultimately, the only hope for patients is a lung transplant, for which they must meet certain criteria to be eligible. Fortunately, Sheryl is eligible and has been on the waiting list since January 2017.
No longer able to work given the severity of her IPF, she passes the time making jewelry, socializing with family and friends and cooking her favourite recipes. She also cherishes the extra time she can now spend with her grandchild.
“While we await that magic call announcing they’ve found a lung match, my husband and I have put our retirement plans on hold,” said Sheryl. “In the meantime, I continue exercising as regularly as I can with my friends from pulmonary rehab. That helps enormously. While it’s not easy, it’s all one can do.”
When were you diagnosed with IPF?
In October of 2014, I felt a pain coming from my lower left back area. I kept trying to stretch it out, but had no success. I went to emergency some time later and they did an x-ray, bloodwork and a CT Scan. Fast forward to May of 2015 when I was referred to Dr. Khalil, it was then determined that I had IPF.
What have been some of the challenges for you living with IPF?
I have shortness of breath and fatigue and am on oxygen. It's frustrating not being able to work. I have a fear of dying and often feel lonely. I have become very emotional, as well.
What led you to the Pulmonary Rehab Program at Ridge Meadows?
After I was diagnosed, Dr. Ervin from Ridge Meadows Hospital wanted to get me into an exercise program right away. He called Stacey and I started the program in June of 2015 - very quick.
How has the Pulmonary Rehab Program helped you cope with IPF?
I have met some wonderful people living with my disease. We are able to share stories, laugh and support each other. I also enjoy being mentored and have the opportunity to take in information and resources. I feel so much stronger from the exercising, as well. So many things.
Do you feel you have adequate care from Doctors and the Health System in general?
I feel doctors are over worked. Other than that, I am very happy with the care I have received from the lung doctors in regard to my condition.
What activities do you enjoy?
I make jewelry and find that very satisfying. I enjoy going out for lunch with my girlfriends. I love spending time with my grandchild and being in the kitchen cooking favourite dishes. I try to keep busy.
Are you on the active transplant list?
Yes, I am happy to report that as of January, 2017 I was placed on the transplant list. Now, it's just a matter of waiting for the right match and staying as up as I can be.
What does the future hold for you and your family with your condition?
Well, my husband and I have had to put our retirement plans on hold for now. We are just waiting for a positive outcome.