I didn’t really want to read George Keulen’s memoir Big Breath In about his journey with Cystic Fibrosis (CF) and lung transplant. Don’t get me wrong – I love reading, and I enjoy a good memoir. But there’s something about people sharing their stories of these specific experiences that makes me feel vulnerable. I am also a double lung transplant recipient as a result of CF, and I guess I was worried I’d feel vicariously exposed or misrepresented.
Curiosity won out and I read it anyway.
The son of a dairy farmer, George worked tirelessly as a teen on the farm and played high-level hockey. He did the requisite therapy on his lungs every day and took his medicine like he was told. His lungs didn’t start to slow him down until his 20s, typical for CF patients. Things he once did with ease like running and farming and traveling became all but impossible – his lungs had too much scarring and too much infection. He needed oxygen everywhere he went, which is cumbersome, but also embarrassing for a young person, and is something I remember very well.
Once George’s lungs started to deteriorate, he was hospitalized so often that Vancouver General started to feel like home. He needed innumerable doses of IV antibiotics and longer and longer stays in VGH. His wife of only a year assumed the role of caregiver, simultaneously trying to live life to its fullest while watching her husband slowly fade.
I was shocked to read that George’s younger brother passed away at 14 from a different genetic condition called Spinal Muscular Atrophy. As he writes in his memoir, when George discovered that CF is fatal and had a life expectancy around 20 years, “it created a self-imposed mantle that I would not become the second child that my parents would bury due to a fatal genetic illness.”
With a deadly disease comes a huge weight of responsibility. This feeling that we’re threatening the peace in our families is a familiar shame that sick people bear. It is a weight that both George and I carry.
Life in Death
It soon became obvious that George needed a double lung transplant if he wanted to survive; so, after a barrage of bizarre tests and psychological evaluations, he was listed for transplant. Being listed is a very strange experience with many conflicting emotions. In one sense, all you can think about is being saved from this agonizingly slow suffocation. You imagine a life free from oxygen tubes, IV lines and coughing up blood. A life in which you don’t have to spend hours doing physical therapy, inhalation treatments and creating makeshift IV poles out of the lamps in your home.
But the new life that new lungs promise for the recipient means something entirely different to the donor.
“I did struggle when people said they were praying for me to get my transplant, because it meant praying for someone else to die,” said George when we spoke via email in early April.
This is perhaps the hardest part of this awful condition. CF patients do not get single lung transplants because our remaining lung is so infected that it would immediately infect our new, transplanted lung. We only get double lung transplants, which ultimately means our donors are no longer living. Lung donors most often have had a sudden and tragic accident and have spent limited time on ventilators.
In his book, George recalls when he was changing his calendar from 2009 to 2010, hoping for a miracle that would save his life. Meanwhile, someone else was changing their calendar for the last time without even realizing it. “But with the changing of the calendar, we were both on a journey heading toward a single day where our lives, and the lives of those closest to us, would explode in an emotional outpouring. One of grief, and the other of gratitude.”
About the Artist
Schumacher is an artist from Kansas City. She explains, “My husband has chronic lung issues, and a rare lung infection he’s been trying to kick for over 2 years. He works in the medical field and we’re living through covid. The idea for this painting may have been based Thich Nhat Hanh’s quote, “forests are the lungs outside of our bodies”, but I think about lungs a lot.”
Emotions of a Transplant
It took over a year and a half of waiting. George was weeks away from death and felt that he was about to drown in mucus, but on June 18, 2010, George got his call. It was here that I had to put the book down, eyes brimming with tears. Something about the parallels of sickness and waiting and feeling terrified for such a long time culminated in a climax of emotion I could not contain. I was crying for George and his wife Kim, and for his donor, but I was also crying for myself.
For me the journey through transplant was lightning quick. After becoming really sick in 2009, I was officially listed for transplant in late April of 2010 and got my life-saving call on August 9th, one day after seeing Paul McCartney play at the Air Canada Centre in Toronto. A three-month wait is comparatively short, and I almost wasn’t mentally prepared. During this three-month period, my one-year-old son turned two and my husband and I had our ninth wedding anniversary. We had to rent a two-bedroom apartment eight hours away from our home in Sault Ste. Marie, Ont., because I was not allowed to be more than two hours away from Toronto General Hospital at any time. My parents were back home working full-time jobs waiting for me to get the call and worrying as only parents can. I was on oxygen, in a wheelchair which served as a stroller for two when we went out for walks, and I didn’t have the breath to even shower myself. I was losing weight almost daily as my lungs needed 3,000 calories just to breathe.
But while all of this health stuff was going on in the foreground, I still had to be – wanted to be – a mom and a wife. Because even though I could not breathe, there was still so much I wanted to do, especially if I died before or during surgery. I could not bear the thought of my son growing up without me. I prayed to survive this ordeal despite not being a very religious person, something that differed from George’s journey as a former pastor at Bridge Community Church in Langley, B.C. This memoir was raw for me and brought back emotions that were too difficult to sort out while I was experiencing them.
George made it through his transplant in 2011 with very few hiccups, considering the fragile state of his body, including low body weight and numerous infections. He was out of the hospital in two weeks! (I was out in nine days, but who’s counting?)
‘Slivers of Contentment’
George does not know who his donor is, but he doesn’t let that bother him. He understands why the family would not be inclined to reach out, and is simply grateful for the gift. As a thank-you, he dedicated a cross-B.C. bike ride to his donor. That’s right. Shortly after transplant, George was in such good shape that he biked across British Columbia. He could have chosen somewhere flat like Saskatchewan, but he chose his home province despite increased difficulty.
George once again works on his father’s farm, wearing a mask to eliminate the risks from potential infectors. But life is far from easy. We are told when we choose transplant that it is not a cure, it is simply exchanging a condition you cannot live with for one that you can. The downfalls are that patients need an elaborate cocktail of medications for the rest of their lives. The side effects can range from annoying to deadly. Faces swell due to prednisone and patients can gain a lot of weight, but the medications also suppress the immune system leaving patients open to bad infections, and are extremely hard on your kidneys. Personally, I have developed advanced kidney disease and diabetes, and I’m only a few years away from osteoporosis at only 43. I work full-time as a teacher, but I am not sure how long this will last. George seems to have avoided most of the scarier side effects, though he realizes that nothing is guaranteed.
“I now seek to find gratitude in the large things, and then in the very small things. I leave out the middle,” he says. “So for instance, I love celebrating the Eucharist in church each week, giving thanks for the life and death of Christ (large things). I also then seek to cultivate gratitude for the slivers of contentment I am able to find day to day in life right now (small things). I am grateful for my transplant of course, but it is not something I always think about. And let’s be honest, we are given a new life after transplant, but there are always ups and downs, limitations and things to watch. The journey continues each day.”
I know exactly how George feels, and it can be easy to start spiraling downward, stressing about what other challenges are to come. But focusing on the present, being grateful for every new day I get to spend with my family and watch my son grow, keeps me grateful for my journey and hopeful for what lies ahead.
(Oh, and P.S., I’m so glad I read it!)
What is Cystic Fibrosis?
According to Cystic Fibrosis Canada, “CF is the most common fatal genetic disease affecting Canadian children and young adults. At present, there is no cure.”
CF mainly affects the digestive system and lungs, causing ongoing infection and eventual loss of lung function. It is a genetic disease, with approximately one in 25 Canadians carrying one defective copy of the CF gene. It’s “estimated that one in every 3,600 children born in Canada has CF.”
CF is a multi-system disorder that produces a variety of symptoms including persistent cough with thick mucous, wheezing and shortness of breath, frequent chest infections, weight loss or failure to gain weight, and infertility or decreased fertility.
The average life expectancy of someone with CF is 44. A transplant can extend life an average of 10 to 20 years.