He’s a Soccer Hall-of-Famer, an author and an extremely proud father and grandfather. Jim Tietjens tells others that in many ways he’s the luckiest person in the world: this from a man who has overcome seemingly insurmountable health challenges. He continues to face each new trial with courage, fortitude and grace. Now, he’s on a mission to give back with a book about his journey and the people who helped him along the way.
Jim’s book, Saves, is about everyone who has supported him, including his grade school friend, Mike, and the soccer coach who mentored him. Jim states it’s all about relationships and being surrounded by great friends and medical teams. His book is his way of honoring them.
At age 64, Jim has mastered the ability to bounce back from setbacks and maintain a positive mindset. He has Idiopathic Cardiomyopathy that has resulted in two heart transplants, a kidney transplant, cancer— twice, several pneumonias, and now, peripheral artery disease. Regardless, he remains positive.
Jim says, “I've been dealing with this since I was 31 years old. My father and one sister died of the same heart ailment.”
One minute he was a professional athlete running a marathon, and the next, it was like someone flipped a switch. He was diagnosed with a hereditary condition commonly associated with heart failure in young adults. Several members of Jim’s family tested positive for the condition. There is no cure, but Jim is hopeful there will be someday.
“Maybe not in my lifetime, but my two kids are negative and can't pass it on to their children,” says Jim. “So, it’s really like a miracle.”
Jim says he was 21 months old when his father passed, leaving his mother to raise him. He attributes his strength and perseverance to her. “She taught me to never stay down, so I've always just gotten back up.”
In 1992, as a newlywed, Jim underwent his first heart transplant. His donor was a young boy killed in a motorcycle accident. He reached out to the donor's family but never heard back.
“He was an only son so it would have been very hard on them,” Jim acknowledges.
Three years later, he and his wife welcomed their son, Jimmy, into the world, and two years after that, their daughter, Annie. For a while, life was good. Then in 2003, Jim was diagnosed with stage IV Non-Hodgkin lymphoma.
“The doctor gave me a 50/50 chance, and I just told myself that she doesn't know me, so I'm going to change it to 75/25,” Jim says.
Six chemo treatments later, he says he was in remission and eventually declared cancer-free, but the chemotherapy had severely damaged his lungs. Jim fought on with unwavering resolve and by that Christmas, his lungs were clear.
His tenacity would be tested in 2013 with another cancer diagnosis: throat and tongue. A one-hour surgery to remove the small tumor became an 8-hour procedure to remove 23 lymph nodes. Still, Jim seemed to take it all in stride.
By 2018, he was in his third year of kidney dialysis, his heart was showing stress and he would need another surgery. This time his heart and kidney donor was a 23-year-old National Guardsman from Cape Girardeau. He met his mother and they still keep in touch. He says he owes everything to that family and everyone who was part of his transplant journey.
“There's a chain of life at work with a heart transplant…and every link has to be strong,” Jim says. “I believe that’s why it’s all about the team, your team of friends, family, and doctors. That's what I'm trying to honor in the book: everyone.”
He continues to deal with the effects of peripheral artery disease, resulting in 15 surgeries and a toe amputation. He says it’s been rough so it’s important to keep a positive attitude.
Jim is now retired, writing and public speaking to share his story. He says he's taking his book to the U.S. Transplant Olympics in Birmingham this July, and is looking at additional national events in hopes his story will inspire others.
Jim Tietjens is surely a man of tremendous faith and courage, and perhaps an eternal optimist. Despite multiple organ transplants and other life-threatening medical issues, he’s still smiling.
"I’ve always tried keeping a positive attitude,” Jim says.
More details about Jim's amazing medical journey, and all those he credits with saving his life again and again, can be gleaned in his new book, Saves. He says the book soon will be available on Amazon and via other major outlets.