Making Every Breath Count
Miranda’s credits her son Kale for giving her life purpose, “He has taught me so much in his eleven years.
With each breath, Miranda Frigon effortlessly feels her ribs expand as air enters her healthy new lungs. This is actually, her third set of lungs, so the act of breathing – something most people take for granted – is significant for Miranda. It renews her hope for the future and is a reminder that her story is not over. Just five months ago, every breath was a struggle and each day was a fight for survival.
It was June 2019, four years following her first lung transplant, that she first noticed something was wrong. Routine blood work showed an abnormality that led to a bronchoscopy. This resulted in a diagnosis of chronic and acute rejection. Doctors treated the acute rejection but advised Miranda there is no treatment for chronic rejection. Chronic rejection can progress slowly, and many people live years with it. But as the weeks turned into months and her lung function rapidly deteriorated, Miranda secretly began to wonder how many more breaths she had left.
At times Miranda wondered if she would survive the gruelling days following her second double lung transplant.
By December 2019, the situation had progressed to the point where Miranda’s days were spent entirely on the couch. She had become completely reliant on her family and boyfriend for everyday tasks. Every night, her boyfriend had to carry her up the stairs to bed.
On New Year’s Eve, the situation took a turn for the worse, “I woke up and was having an exceedingly difficult time breathing and I knew I had to go to the emergency room. Upon arrival my boyfriend put me into a wheelchair and wheeled me into the ER. That was the last thing I remember.”
She awoke on January 11 on a ventilator and was informed she had been put into a coma while they searched for donor lungs. Miraculously, it took only eleven days to find a perfect match. Compared to the first transplant, a result of cystic fibrosis, Miranda describes this experience as night and day.
With her first transplant, the decline was terribly slow, occurring over the course of three years with numerous hospitalizations for maintenance treatments. She was able to maintain a somewhat normal existence; recovery was relatively uneventful, returning home within a month of her transplant surgery.
Transplant number two was the complete opposite. Post-transplant days were spent in and out of the ICU, her lungs repeatedly filling with fluid, requiring an additional three trips to the operating room.
Following 96 days in the hospital, Miranda is back home.
Miranda is very candid about the toll this took on her, “My body became so weak from being bedridden for so long that I lost my ability to walk, or even pull myself up in bed. I cannot begin to explain how defeated I felt. I had to rely on the nurses and my boyfriend for everything. It has taken a long time to regain my strength and is still a work in progress. I spent 96 days in the hospital. I thought already going through it once had prepared me for what to expect, but nothing could have prepared me for what I endured.”
As she continues to recover and embrace her new lease on life, Miranda reflects on what it means to receive two double lungs transplants, “Transplantation is not a cure but I am hopeful that my second transplant will give me time to watch my son graduate, to see him fall in love and get married, and start a family of his own. There is always going to be the lingering fear in the back of my mind of not being able to be here for him. All I can do is live for today and not take any day for granted.”
Miranda looks towards the future with hope and optimism. She has faith that, in time, transplant science will develop improved treatments to address rejection and engineer better grafts to prevent rejection entirely. To be able to receive a second chance at life and live without the potent anti-rejection medication would be the ultimate goal of transplant research, according to Miranda.
Of all she has to be thankful for, her deepest appreciation goes to her donor for their selfless decision, and the health care team for keeping her spirits up and caring for her in her darkest moments, “I am forever thankful to my amazing healthcare team for believing in me and giving me more time with my son and my family. There really are no words to express the gratitude I have for them.”
To help create a brighter future for transplant recipients, please support organ donation and transplant researchers in B.C. who are trying to make transplant a cure. Donate to the Transplant Research Foundation of B.C. at https://www.trfbc.org/give/donate/.
