If you agree with Leo Tolstoy, “The strongest of all warriors are these two – Time and Patience,” then 16-year-old Hunter Tillman is your hero. Hunter has endured a lifetime of pain, medical procedures, and waiting. Everything changed, though, on April 1. Hunter received a new heart. The procedure took nearly eight hours; the waiting almost two years.
“At the end of August 2015, Hunter’s pulmonary blood flow slowed and he went into heart failure,” his mother, Melissa Tillman formerly of Milbank, says. “The doctors placed him on the heart transplant list and started medication to get him further along until a heart became available. The doctors predicted it would take three months or less to find a heart.” Once stabilized, the Mayo Clinic in Rochester, Minnesota, sent him home with 12 medications to take three times a day, a 24-hour IV pump, and orders to have their bags packed for when they got word a heart had been found.
Melissa says, “We made lists on what to grab, because we were told we would need to be back to the Mayo within four hours of the call. You don’t sleep much at first making sure you answer the phone in the middle of the night. And every time the phone rang during the day and the caller ID said it was the Mayo, my heart would stop. But it would just be a nurse asking another question.
Every year in the United States, only about 2000 hearts become available for transplant. The list of people waiting usually exceeds 3000. Plus, the donated organ and those waiting have to be a match. These odds don’t bring comfort to an already overwhelming ordeal. It takes courage and extraordinary patience just to keep going. But, after what seemed like an eternity, the coveted phone call came. On March 31, a heart was available for Hunter. “I was shocked and emotional,” Melissa remembers. “We had almost given up one would ever come. I started crying on the phone. Even now, I can’t believe he has a new heart.”
The Tillmans, who live in Sioux Falls, had only hours to get to the Mayo Clinic. But this wasn’t their first trip, it was another in a long series. Hunter’s initial journey was in 2000 in an airplane. He underwent surgery on his heart when he was one day old. He also needed heart surgeries at age two and four. “The doctor’s knew his heart would not last his entire life,” Melissa says. Hunter was born with the chromosomal disorder called Velocardiofacial Syndrome. A tiny part of his 22nd chromosome is missing, but that slight anomaly manifests a myriad of diseases and conditions. “A majority of the time this syndrome causes heart issues,” Melissa says, “but Hunter, was also born with just one lung.”
Throughout Hunter’s life, his mother says they have been able to avoid most other serious illnesses, but just a few weeks before his heart transplant, Hunter’s appendix burst. “We had to fly him to the Mayo where he had emergency surgery to remove it.” He stayed another two weeks to recuperate.
As with most patients who experience serious illnesses, isolation becomes the norm. Hunter also encountered this. He was kept out of school and Melissa would pick up his homework. Eventually, he returned part time for as long as he could tolerate it. “It’s kind of funny because his teachers always tell me he is the class jokester – so it was fitting that he got his new heart on April Fools Day,” his mother said.
To help ease the confinement and long wait, Melissa sent a letter to each NFL football team to see if anyone would send him a little something to brighten his day. “He is a Packers fan, and Aaron Rogers sent him two huge boxes which he loves to tell people about.” Ten NFL teams sent special gifts to Hunter. Matt Forte of the Chicago Bears sent a signed football. The Colorado Rockies also sent him a package after his dad reached out to them. Family and friends sent packages, too. He really enjoyed mail time!””
Time wore on, but still there was no heart. His mom said, “Hunter was able to go camping or visit his grandparents, Beth Brown and Duane and Joann Tillman, in Milbank for a weekend here and there. We then got the OK for him to spend the summer with his dad, Eric Tillman, also formerly of Milbank who now lives in Spearfish. The doctors agreed to this as long as we had an airplane lined up, just in case we got the call.”
Now, with his new heart, activities and outdoor pursuits could be a regular way of life. A miracle has occurred. But for Hunter, the wait continues. Hunter will remain at the Mayo Clinic for three months. His mother says, They are still watching him for rejection of the heart and are concerned about pneumonia in his one lung. But for the most part, the doctors are very happy with how he is doing.” Melissa, who left her job in September 2015 to take care of Hunter full-time, will stay by his side. She hopes to return to the working world after Hunter recovers.
As for Hunter, he gives his parents and nurses a few eyebrow raises, but has said very little. He contents himself with his phone, his laptop, and his Xbox. “I think it has been a lot for him to take in such a short time – his emotions are all over the place,” his mother says. “But anyone who has met Hunter, fell in love with him instantly.”
We are all so happy and thankful,” she says. “We do not know where the heart came from, but we can send a letter through the United Network for Organ Sharing (UNOS). They will forward it to the family and the family can choose to respond or not. So, we may or may not get to find out where it came from. Either way, even though that family experienced a loss, we are grateful for their donation of life to Hunter.”
Another great writer, Dr. Seuss, must have been thinking of them all. He wrote, “To the world, you may be one person, but to one person you may be the world.”
Photos: Hunter and his Mom – Hunter in hospital after the heart transplant – Hunter and his Dad