Breathing New Life: A Mother’s Story of Organ Donation

As part of Organ Donor Awareness Week in Newfoundland and Labrador (April 19-25, 2015), Eastern Health shares one mother’s story of her son’s bilateral lung transplant and how this selfless gift from a donor family breathed new life and new beginnings into her son and family.

On October 5, 1983, I delivered my second son, Matthew. He was a happy and healthy baby for the first eight months of his life, but that quickly changed due to an ongoing battle with respiratory infections, weight loss and admissions to hospital. In February of 1985, at the age of 16 months, our questions finally had answers; our son had Cystic Fibrosis (CF).

“CF is a progressive, fatal disease with no known cure or treatment and something we knew nothing about at the time.”

CF is a genetic disease that affects primarily the respiratory and gastrointestinal (GI) systems in affected patients. It causes mucus to be thick and sticky, which traps bacteria causing recurrent infections in the lungs, and prevents digestion and absorption of nutrients in the GI tract. CF is a progressive, fatal disease with no known cure or treatment and something we knew nothing about at the time.

However, we learned a lot very quickly and rapidly realized that managing CF would be demanding and challenging. Matthew did physiotherapy two to three times a day and took medications via inhalation to keep his lungs clear. Digestion required that he take seven to eight pills every time he ate.

Despite all of our best efforts, his teenage years showed a declining lung function and he was spending an average of two months in hospital each year.

In June of 2008, Matthew struggled to finish his school year at College of the North Atlantic, but managed to get through. Just two days after he finished classes, he was admitted to the intensive care unit (ICU) for antibiotic therapy and four days later he was airlifted to St. Michael’s Hospital in Toronto to be listed for bilateral lung transplantation.

To say it was a stressful time is a big understatement. Although we knew a transplant may be required someday, we had always hoped and prayed that we would be that lucky family who son’s disease would never progress to this point.

If you have to deal with something like CF in your life, having a lot of family support is an amazing asset. Our family was our backbone; they saw us through thick and thin. Life in Toronto, away from our family and friends, when we needed them most, was scary and difficult. But with frequent visitors from home, we settled in to wait for “the call.”

“Matthew’s health continued to deteriorate and we all prayed for and feared that call that could be a new beginning or the end.”

Matthew’s health continued to deteriorate and we all prayed for and feared that call that could be a new beginning or the end. Matthew expressed his wishes about heroic measures should there be complications post transplant and we discussed funeral arrangement in case things didn’t work out. While these are not conversations you ever plan to have with your 24-year-old son, they were necessary talks and despite them, Matthew remained positive and upbeat about the whole process.

On September 18, after just three months of waiting, the call came.

When the phone rang just past midnight, we all knew it was the phone call we were waiting for. While the rest of us ran around in a panic grabbing bags and keys, Matthew calmly announced he was going to grab a shower cause who knew when he’d be able to do it again.

When we arrived at Toronto General Hospital, he had all the required tests performed without a moment’s hesitation or a question in his mind. They assigned him a room and told him surgery would be early in the morning.

His dad, sister and I worried, fretted, prayed, paced the halls and cried throughout the night. Matt climbed into his bed and slept like a baby. We were awestruck with his calm demeanour – he was obviously ready for this to happen and was at peace with his decision.

The next day was long. Matthew spent 12 hours in the operating room before being transferred to the ICU, still intubated and ventilated. Very early the next morning, he came off of the ventilator and just two hours later we got him up and he walked up the corridor to the waiting room to say ‘hi’ to his many family members and friends who had come to check on him.

He continued to work hard, push himself and do extremely well. Finally, on December 16, we received an early Christmas gift – he was cleared to return home to Newfoundland and his life. In early January, he returned to school and has never looked back.

Matthew, celebrating five years of good health post bilateral lung transplant.

Matthew, celebrating five years of good health post bilateral lung transplant.

Matthew continues to do well six and a half years later; he has a challenging work life, a wonderful, supportive girlfriend and a new house!

“…that incredibly selfless and generous decision to help someone else during a devastating time of loss is beyond description. There are no words to explain our gratitude.”

Every year on September 18, we celebrate Matthew’s ‘lung anniversary’ and count our blessings that we still have our son with us. But more importantly, we stop to think about our donor family.

We know nothing about Matthew’s donor family, except the fact that they are extremely kind and caring. The compassion and grace they demonstrated by making that incredibly selfless and generous decision to help someone else during a devastating time of loss is beyond description. There are no words to explain our gratitude. We only hope they realize the impact their decision has had not just on Matthew, but on all of his family and friends. I hope that knowledge brings them some measure of comfort.

Life can be pretty awesome post-transplant; Matthew is an example of that. Yet, sadly there are over 4,500 people in Canada waiting for an organ transplant, hoping for a second chance at life.

Please, consider being an organ donor. Sign a donor card and express your wishes to your family. It is the kindest, most selfless gift you can give a person and a beautiful way to leave your mark on this world.

open_logoFor more information on organ donation in Newfoundland and Labrador, please call: (709)777-6600 or 1-877-640-1110 (toll free).

Special to StoryLine: This story was written by Edna Cahill, mother of a lung transplant recipient and instructor with the respiratory therapy program at College of the North Atlantic in St. John’s, NL.

13 responses to “Breathing New Life: A Mother’s Story of Organ Donation

  1. You are an inspiration Edna, thank you for sharing your families story. By sharing this amazing story, others can see the life saving difference organ donation can make. All the best to your son Matthew and your family.

  2. Great job Edna. All the best to Matthew and to all his future endeavors. He deserves it. Also all the best to you and your family.

  3. So inspiring Edna! Brought tears to my eyes! Warmest wishes to you, Matthew and the entire family.

  4. My card is also signed . I have a cousin living in Ontario who was given a second chance with a double lung transplant . He to suffered from CF from the age of 2yrs old. He is doing great now , Thank God & his Doner family. Wishing Matthew all the best life had to offer.

  5. Wonderful story, my son had a liver transplant in January2011@ sickkids , we are fellow newfoundlanders.

  6. I recognized Matthew’s picture while checking my work email. Matthew was a friend of my brothers (who is also named Matthew) back in juniour high school. I am so happy to see he is doing so well in life! Wish you nothing but the best Matthew, and I will be signing my donor card.

  7. I saw Matthew’s picture and just had to take a minute here at work and read the story. Matthew and his family were our neighbours for a number of years. My son Matthew and Matthew Cahill are friends. My son, daughter and several other friends went to Toronto when he had his transplant to be there to see him and offter their support. We are so happy for Matthew and even though we don’t see each other often we want him to know that we always think about him and ask people that know him if he continues to do well. Take care

  8. Still think of all of you often. Matt you are one handsome guy. Good luck to you and your family.

  9. A friend of mine went through the same ordeal and thankfully she’s now doing well due to the gift of organ donation. I am so happy to hear your son is also doing well.

  10. Such a great story to read, nice to know that your son is doing good, no one really knows what its like till you have to wait for someone to die to help someone else live, my sister just went through the same thing this past December, she had a liver transplant, she is doing good but still has a long way to go yet. We were so thankful to the family and person who made this happen for my sister, I know they were heartbroken by loosing their loved one,especially just days before Christmas, but I’m sure they were happy just knowing that they were giving a stranger another chance to live, we will forever be grateful to this unknown family, and pray for them and their lost family member.

  11. Pingback: OPENing your Heart to a New Way of Giving | Eastern Health's StoryLine·

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