A new life… twice
Courtesy of Sherri DeFina
Matt DeFina, prior to undergoing a lung transplant in 2020.
The beginning…
Midnight, May 16, 2012. I stood in the ICU at Stanford Medical Center and watched my son, Matthew, breathe peacefully, without oxygen, and without effort, for the first time in many years. But, the lungs doing the breathing weren’t his — they had come from a young man who had recently lost his life, whose family had given us the greatest gift possible through organ donation — new life for our son, who had waged a 34-year war against the ravages of cystic fibrosis.
As I quietly cried and thanked God for the miracle before me, I was flooded with memories of the past, and overwhelmed with gratitude for the future that now lay before Matt.
I remembered the literally hundreds of hours of chest-pounding therapy done by my husband, Chuck, and me, as we sought to loosen the glue-like mucus from his lungs so he could breathe; of too many doctor visits and hospitalizations to count; of a daily regimen of antibiotics and inhalation drugs to keep his airways and lungs free of infection and inflammation. And of course, the grim prognosis that even with all our efforts and our dedication to his health, Matt would probably not live beyond four years.
God, however, had other things in mind for Matt and for us. We determined early on that we would control Matt’s disease as much as was within our power — we would NOT let it control us. It wasn’t easy, to be sure. I was scared, depressed, angry, mournful — all the emotions associated with grief. But I also knew that God’s presence, and the prayers of his people, surrounded us. I continually sought help from God’s Word, and clung especially tightly to Isaiah 43:2, “When thou passest through the waters, I will be with thee, and through the rivers, they shall not overflow thee; when thou walkest through the fire, thou shall not be burned...” We prayed, trusted, and then, did everything we could to manage Matt’s disease.
Against all odds, after a rocky start, Matthew began to thrive. His life, to most outside observers, was relatively “normal.” Few people knew the rigorous chest therapy he endured twice a day; the thirty or so pills he took to prevent infection and to aid in his digestion; the inhalation therapy he did twice a day to open up his airways. Doctor visits and hospitalizations were scheduled around family vacations, and eventually around school, so that Matt could experience life as everyone else did.
Another milestone passed when Matt started school. We continued our daily routine, and Matt achieved perfect attendance. He participated in sports, in student government, in community service projects, and in our church youth group. His progress continued to amaze his doctors and, before we knew it, high school graduation was upon us! Armed with several scholarships, as well as a deep determination to succeed, Matt entered Fresno State University, and received his BS in Kinesiology. He had learned early on the importance of taking care of himself, and the lessons of responsibility, dedication, and discipline that Chuck and I had endeavored to teach him came to fruition as he entered adulthood.
While at Fresno State, Matt met and fell in love with Denise Grigsby, a beautiful woman of great faith, who became Matt’s true partner and soul-mate. They married in 2003 and their future seemed assured. Matt worked full-time in pharmaceutical sales. They bought a home and adopted a beautiful baby girl, Gracie Faith. Matt received a Master’s Degree in Pharmaceutical Marketing from St. Joseph’s University in Philadelphia. Life in his twenties was, as Matt put it, “sweet.”
But cystic fibrosis is an unrelenting enemy, and the human lungs can withstand only so many onslaughts of bacterial infection. As Matt entered his thirties, life became more difficult.
Hospitalizations became more frequent, his lung function began to decline, and, in September 2011, his doctors insisted that he go on medical disability. It was a last-ditch effort to concentrate completely on his health, and to try and regain enough of his lung function that his quality of life would improve. But that was not to be. In spite of all his efforts, in spite of his 100 percent compliance with therapy and medication, the cystic fibrosis was finally winning the war it had waged with Matt for 34 years.
In April, 2012, the medical team at Stanford delivered the news that without a transplant, Matt was not likely to live for more than two years. His lung function had dropped to 22 percent, the lowest in his entire life. He was on oxygen 24 hours a day. He couldn’t walk across the room without stopping to catch his breath. But worst of all, he couldn’t hold or play with Gracie, because of how weak he’d become and the effort it took to breathe.
After much prayer, and soul-searching, Matt and Denise decided to move ahead with the transplant option. Matt underwent all of the testing, and was officially placed on Stanford’s transplant list on April 26, 2012. We were told that we could expect a 3-6 month wait for new lungs. But, once again, God had something else in mind!
Just 2 1/2 weeks after placement on the transplant list, he received the call for new lungs. I stood at his bedside and wept tears of joy and gratitude. Gratitude for a family who, in spite of their grief, was willing to give others a chance at life; gratitude for a skilled surgeon and his team at Stanford who removed Matt’s battle-scarred lungs and replaced them with pink, healthy ones that could breathe; gratitude for the literally hundreds of friends and family members who had prayed and trusted God for a miracle in Matt’s life. But most of all, gratitude for the timing, the miracle, and very presence of God on the journey we had been on for the past 34 years.
And now the rest of the story…
Fast forward to 2019. The first transplanted lungs, unfortunately, developed chronic rejection and we were told that new ones were needed. Matt was re-added to the list at Stanford for a second double-lung transplant. God’s army of prayer warriors began to intercede, and in July, 2020, amid the horror of COVID, a miracle happens. The call we had been waiting for comes — they had donor lungs available for Matt. But instead of a simple nine-day hospitalization that astounded everyone back in 2012, this transplant held a much rockier road to recovery. While the surgery itself went relatively smoothly, the recovery would tax all of our strength, faith, and trust in God. Unexpected complications arose every day, it seemed. In addition to his double lung transplant, Matt endured a pneumothorax, eight bronchoscopies, a stent placement, a surgical thrombectomy, a racquetball-sized hematoma, four upper extremity ultrasounds, two CT scans, an echo, four chest tubes, dozens of X-rays, and a surgical removal of a mediport over a 32-day hospitalization — not to mention a body full of scars, a road map that tells the story of his 43-year battle with cystic fibrosis.
Matt’s mantra — NEVER give up, ALWAYS persevere — has carried him through some of the most difficult trials anyone can imagine. And through it all, he has been surrounded by the love, support, and strength of his beautiful wife and daughter, a praying and committed family, a skilled medical team, and hundreds of friends who look to him for inspiration in their own dark moments.
But, most importantly, he has been surrounded by the power of an almighty God who is still in the miracle business. The miracle that began in 1977 when Matt entered the world continues to manifest itself today, in 2021, as he continues not just to survive, but to THRIVE!
“Behold, I am the Lord, the God of all flesh: is there any thing too hard for me?”
— Jeremiah 32:37
And our family would certainly answer a resounding “No!”
