He was 7 when he found out that the kidney disease he had suffered from throughout his tender young life was actually life-threatening and would eventually require a transplant. But William McCarty Massie, known as “Mac,” had always been an upbeat child, and living with failing kidneys was not as daunting to him as it might have been to other children.
Mac at soccer practice at age 9.
Mac’s diagnosis of FSGS (Focal Segmental Glomerulosclerosis) meant that his kidneys “did not filter as they should, leading to spilling of significant amounts of protein,” according to his father, Vaughan Massie, who is an orthopedic surgeon with CMI – Carolina Musculoskeletal Institute. In layman’s language, his kidneys are scarred and do not do their job of filtering correctly, which leads to more kidney scarring. He had been on many medications and combinations of meds and treatments for the less severe diagnosis of Minimal Change Disease, but once FSGS was confirmed through biopsies, the family knew Mac would eventually be looking for a donor kidney. By 2015, Mac’s lab results revealed that his condition had become serious enough to necessitate beginning the transplant process.
Finding a Donor
Vaughan and Meg Massie, Mac’s parents, always thought one of them would donate a kidney to their son. But testing showed that Meg was not a candidate because of her different blood type, and although Vaughan’s blood type was a match, his kidneys had benign cysts that ruled him out. Other family members then stepped up to the plate. While all the Massie family were blood matches and willing to part with a kidney to save Mac’s life, the same type of benign cysts were found in many other members of the extended family, which made them ineligible as well. Except David, Vaughan’s then 33-year-old brother, who came up a perfect match with perfectly healthy, cyst-free kidneys. David Massie was young, willing, and healthy, a single young man traveling the country working for Burton Snowboards. He was also very close to his nephew Mac. But being a great match for Mac was not the only consideration. David’s future health was also a factor. What if he were to develop cysts on his remaining kidney later in life like many of his other family members? Would the lack of another kidney jeopardize his own health? A meeting with a geneticist and the Massies determined that David was at low risk of developing cysts and thus concluded that David’s willingness and health were the determining factors for proceeding with the kidney donation.
The Nephrectomy and the Kink
Mac smiles before the nephrectomies at MUSC in October 2015.
By the end of September 2015, Mac, now in 8th grade at St. Mary’s Help of Christians School, went to MUSC in Charleston to meet with the transplant team. First up was bilateral nephrectomies or removal of both kidneys. This was scheduled for October 9th. On that date Mac’s kidneys would both be removed and he would be kept on dialysis for 10 days until the actual transplant would occur. The removal of his kidneys before transplant would reduce the risk of FSGS recurrence with his new organ. He would also be “shot full” of immuno-suppression drugs so that his body would not reject David’s kidney when it was inside Mac’s body.
The nephrectomy was successful, but there was a kink in the dialysis catheter, and an adjustment was needed the next day. Unfortunately, and necessitating blood transfusions.
Uncle David Massie, Mac’s kidney donor.
“I almost died,” said Mac. But he didn’t. When he roused from the procedure, he was confused. There was a ventilator in his mouth and throat, and his chest was full of tubes to drain the blood from his chest cavity. He was also having dialysis. “Why am I not peaceful in the recovery room?” he thought to himself. When his parents noticed he was waking up, Vaughan bent down close to Mac’s face to reassure and comfort him. “That’s when I threw up all over him,” Mac said.
The ventilator prevented him from talking, so he took to writing to communicate. Still, he tried to talk around that pesky tube. “I mouthed ‘I love you’ to my mom and dad. I wanted them to know that everything would be okay.”
“That ventilator didn’t last for long,” said Meg. “Mac is strong-willed, and the doctors soon felt confident that Mac could adequately breathe on his own, so they removed it.”
It All Fell Apart
At the time, Vaughan and Meg were so thankful that Mac was still alive that they were not considering the ramifications of the transfusion. They were more concerned with restoring Mac’s health so he could weather the upcoming transplant surgery.
However, over the coming weeks, they learned that the transfusion of three units of blood during the procedure crisis had introduced unwelcome antibodies into Mac’s system. Now David’s kidney, scheduled for the transplant as soon as Mac was healthy enough for surgery, was unacceptable David was devastated. And here was Mac, without kidneys, without the prospect of another donor.
These new antibodies also ruled out 80 percent of the U.S. population, thus shrinking the donor pool even further. Consultants advised the Massies to look at potential donors in other parts of the country, where different population types would broaden the likelihood of a match. The Massies were also urged to put Mac on deceased donor lists, originally avoided because of possible lower transplant success rates.
The Massies all hold fast to their crosses and their faith.
Once Mac was stabilized, Vaughan returned to work and his daughter in Aiken, 9-year-old Anne Fenton, who had been looked after by her grandparents, Les and Penny Rue, who fortunately lived right next door. Mac was eventually released from the hospital into the care of his parents. He would do dialysis in Aiken and would see his regular pediatric nephrologist in Columbia while waiting to find his miracle match.
Dialysis, Tutoring, Grilled Cheeses, Sadie, and Jewelry
Mac had missed a lot of school in the classroom, but was tutored faithfully by Bonnie Martin. “She was an angel,” said Meg. Occasionally, Mac attended school for half a day, but frequent dialysis sessions prevented him from steady attendance. St. Mary’s, with the careful guidance and wisdom of Peggy Wertz and Laura Webster, created a plan for Mac to complete the classes he would need to stay on track and graduate with his class. “The transplant process and all of the hurdles we encountered were depressing and hard on him, “ said Meg. “He’s an intellectual kid and needs stimulation. It was helpful to his spirit for him to do some normal things. A change of scenery, seeing his friends, and learning were all good.”
The normal things that cheered him up were “grilled cheese sandwiches, McDonald’s, and Sadie,” recalled Mac. Sadie is the Massies’ puppy, a Golden Doodle, who was added to the family only days before the transplant process began. According to Mac, “Sadie is a gift from God. She was by my side throughout the whole process.”
It was important for Mac to exercise, so Mac, Meg, and Sadie walked a great deal and spent time discussing Meg’s new jewelry designs, something she began to while away the endless hours of waiting in the hospital and during convalescence. Meg’s jewelry business, 828 Collections, thus began and is flourishing today.
Mac was not healthy enough for transplant until March 2016. He underwent dialysis three times a week, a grueling endurance test for the 13-year-old, who would just start feeling better when it was time for another four-hour round of dialysis. “Dialysis withers your body till you are nothing,” said Mac, whose weight fell close to 80 pounds at the time. “Some days were worse than others, but at the worst, I told my family, ‘I don’t think I can do this any more.’ I wouldn’t have minded if I had died. I didn’t care any more.”
Even though the dialysis was rendering Mac’s body healthier in terms of progressing toward another transplant surgery, another kidney donor had yet to be found. “We literally had hundreds of offers from family and friends and even strangers,” said Vaughan, but vetting each potential donor as acceptable required extensive testing and many insurance hoops. At times, the wait seemed unbearable.
“I Have Rachel’s Kidney!”
The Massies then discovered the Living Donor Exchange Program, whereby a kidney donor could enter a “chain” of donors.
Although David’s kidney was no longer a match for Mac, his kidney could be a match for another person. “David was willing to give his kidney to a stranger if Mac could get a kidney from someone else who was a match,” explained Vaughan. Some potential arrangements initially fell through, but in the end, the Exchange Program constructed a chain of five donors and five recipients. It required that all 10 people be ready and willing to undergo surgery on the same date, so that the donor kidneys could be flown to the recipients within a short period of time and the transplant surgery performed.
No more chest tubes!
This time the chain was unbroken. The exchanges – removal and transplant surgeries – were performed on all 10 people on March 1, 2016. Since that date, both Mac and David Massie have done beautifully. And so has his donor. “I have Rachel’s kidney,” beamed Mac, referring to Rachel, the young woman from Rochester, New York, who donated her kidney through the Exchange Program to enable her older brother to receive a kidney from another donor in the chain.
Many weeks after the nephrectomies, this X-ray still shows damage to Mac’s right lung as a result of procedure complications.
“We made a video for Rachel even before the surgery,” said Mac. Since then, Rachel has become part of the Massie family. “She’s awesome and perky,” smiled Mac. They communicate with each other through email and texting, sending photos and videos. Meg noted that Rachel knew what it meant to get a kidney, because as a younger sister, she had gone through great anxiety watching her brother’s health issues and suffering, much as Anne Fenton has done as Mac’s younger sister.
Throughout Mac’s ordeal, the Massies were overwhelmed by the kindness of others. “We saw the innate goodness of people. Our hearts were broken by the trials Mac faced, but were also full because of the incredible goodness in others we had the chance to experience. We were amazed at the outpouring of support and prayers, offers of kidney donation, meals and so much more.”
During the roller coaster events starting with the initial nephrectomies in October, several churches held prayer vigils for Mac and his family. His school, St. Mary’s, offered a prayer service for him. St. John’s Methodist Church offered a day-long prayer vigil, and Vaughan’s father’s church, First Scots Presbyterian in Charleston (where The Reverend Danny Massie was senior pastor for many years), coordinated a 36-hour prayer vigil for him. “We are blessed,” said Meg.
Mac Massie Today
Today, Mac Massie is a freshman at Aiken High School, having graduated from St. Mary’s with honors last year. He runs with his father two days a week, and works out at the gym with him on Saturdays. On Mondays, he takes golf lessons with Daniel Seawell at Houndslake, who has become a great mentor and friend. He’ll never be able to participate in contact sports, but golf and running seem to be a great fit for him.
“I feel better now than ever. I have more energy,” stated Mac. He has gained 45 pounds and grown five inches since a year ago, when he didn’t care if he lived any more. He’ll likely need another kidney transplant in about 10 to 20 years, but that seems like a long time off to a young man who turns 15 on April 19.
“A cord of three strands is not easily broken,” quotes Mac (center) from Ecclesiastes 4:12 about his relationship with his cousins, Sutton Norris (left) and Forde Norris (right).
“It was one heck of a journey, a roller coaster ride with many ups and downs. I’m glad it’s over, and now I can move on,” said Mac. “I’m so much better – I was living with a failing kidney! Not anymore!” He’ll still be on meds for his lifetime, but they’ll be manageable.
“I laughed in the face of death!” he said, grinning.