My name is Wally Speckert. I am a 56-year-old CF adult. When I was born, the life expectancy was only 4 years of age. I was not expected to learn to spell my own name. However, after a 25-year career at the Bank of Canada, my transplant journey began when my lung function plummeted to 20% in the summer of 2013. I could not rebound above 30%. I was in “end-stage CF”.
“I was in “end-stage CF”.”
In November 2014, I moved in with my support persons, my daughter and her fiancé in Cambridge. I also registered for the Toronto General Hospital’s (TGH) lung transplant program, recognised as one of the best in the world. The median survival expectancy for TGH’s lung patients after transplant is 5 to 8 years, and even a bit longer for CF patients given our younger average age and history of compliance.
However, transplants require organ donors! If we want friends and loved ones with CF who are on transplant lists to get compatible lungs in time from anonymous donors, we should be willing to sign up as donors ourselves and make sure that our loved-ones know and understand our decision to donate our organs. I also think that people with CF and their families should encourage their friends and other family members to do so as well.
Shortages of donor lungs in combination with the fact that, I was in relatively good shape for a transplant patient, resulted in my wait turning into a 25-month marathon, including two false alarms! I lived each day to the fullest during my waiting period. It’s important to enjoy your journeys in life, not just the destinations!
“I lived each day to the fullest during my waiting period. It’s important to enjoy your journeys in life, not just the destinations!”
After a great start to my transplant on December 9, 2016, I had several obstacles early-on including hallucinations, speech impairment, atrial fibrillation, considerable pain, and air leakage into my stomach. It was tough going, but after 23 days I was able to leave the hospital and start my recovery in earnest, travelling three times a week for more than two months to TGH from Cambridge for workouts and a barrage of clinical tests and appointments.
I was very blessed to have my daughter Katy, her fiancé David, and my son Tom, who flew over from Germany, by my side during my recovery! By the three-month mark my lung function (FEV1) was over 2½ times what it had been pre-transplant!
But lung transplantation is not a cure! It is a way to prolong life and to trade off one set of lethal problems for another set of critical constraints. Transplant patients must take immunosuppressants like Cyclosporine, every 12 hours for the rest of their lives. If we forget, we risk setting off a rejection event which could prove fatal. Furthermore, since we are immunosuppressed, we must take extra care to avoid contact with germs.
While these challenges may seem daunting, I have yet to meet a lung transplant recipient who regrets their decision despite what they went through! There will always be new challenges, but anything life may throw at us certainly beats the alternative!
“I have yet to meet a lung transplant recipient who regrets their decision or what they went through! There will always be new challenges, but anything life may throw at us certainly beats the alternative!”
Transplantation does make a positive difference in the lives of those who receive one! For the first time in my adult life, I can now take a “big deep breath”. Without my transplant, I would not be able to play badminton without an oxygen tank. I would not be able to repay my ageing Mom for caring for me so well. I would not be able to walk Katy down the aisle at her wedding this summer at normal speed and without an oxygen concentrator in tow. Nor would I ever have the opportunity to hold my grandchildren someday.
But I dream of a World without Cystic Fibrosis, where we don’t need to rely on a transplant to extend our lives by a few more years! My new lungs and I will continue to volunteer through Cystic Fibrosis Canada to help make that day happen – or to make that dream a reality!