October 23, 2019
By all accounts, Kyle was a healthy, 46-year old husband and father. Until he wasn't. In 2013, he held a demanding job with the Missouri Department of Transportation, spending long days outdoors on his feet. He was also a volunteer firefighter for the Higginsville, Missouri brigade. On his days off, he liked to hunt and fish.
When summer turned to fall, Kyle came down with a cold. But this virus was stubborn. Even after 2 long rounds of medication, he couldn't shake it, and his cold turned into a case of pneumonia with bronchitis.
Just after New Year's 2014, Kyle's primary care physician ordered an X-ray to check his lungs, and the images revealed a worrisome surprise – Kyle's heart was enlarged.
"My doctor wanted me to get an echocardiogram as a precaution, but he didn't seem too concerned," he says. "He did want me to see a local cardiologist and get that test. After it was over, the nurse said they'd get back to me in a couple of days with the results."
Kyle didn't even make it home before doctor's office called. "They said to come back as soon as I could. I thought to myself, that doesn't sound good. The very next day, I went back, but this time I brought my wife, Jill, with me for support."
The cardiologist told the couple that Kyle was in heart failure, explaining that the stubborn virus he'd been dealing with had settled in his heart. The plan was to place Kyle on medication and keep watch on his condition. But it didn't take long for his condition to worsen.
"We weren't home long when I turned to Jill and said I just didn't feel right. I asked her to call an ambulance," he says. "I passed out before they arrived and woke up to see the paramedics and all of my friends from the firehouse standing over me."
Remarkably, the heart monitor the paramedics placed on Kyle showed nothing unusual, and Kyle seemed fine, so they left. But soon, he passed out again and the paramedics were back. This time, his heart rate had skyrocketed to 280 beats per minute and he was rushed to the hospital. Doctors implanted a pacemaker and a defibrillator in Kyle's chest. Prescriptions were ordered, and the cardiologist told Kyle to come back in 6 months.
Second opinions matter
Kyle tried to go about his life as usual, but he knew that something was still "off." He was fatigued and out of breath all the time. Little by little, he was giving up all the things he enjoyed, and work was getting harder. It was time to get a second opinion. This time, Kyle and Jill made the 90-minute drive to The University of Kansas Health System.
For nearly a year and a half, Dr. Sauer and his team tried every conservative measure they could on Kyle. He took the latest approved heart medications and had an ablation to tackle the irregular heart rhythm that continued even with the pacemaker.
"We went through a pretty thorough investigation to find the root cause of why Kyle's heart was failing," explains Dr. Sauer. "We weren't completely positive that the virus was the culprit alone."
What the doctors did know was that if a virus lands in the heart, there are no truly effective ways to heal it.
"Once the virus settles in the heart, it's difficult to treat and stop the damage from progressing," says Dr. Sauer. "The question we can't answer is, why does one person get a common virus like a cold virus and gets better, but another person ends up with significant heart injury? We theorize that in Kyle's case, there was most likely a genetic predisposition that no one could have foreseen."
Over the next few months, Kyle continued to see Dr. Sauer regularly to monitor his health and treatment regime, trying his best to stay positive.
'We've tried everything else'
In August 2016, Kyle thought he was just going to another appointment, but Dr. Sauer told him he had done everything he could, and the only solution left was a heart transplant.
"I told Kyle, 'I feel like I failed to make you better.' But Kyle was the kind of person that rolls with tough news. He chose to see it as a transition to hope for his future," Dr. Sauer says.
What most people don't realize is that hearing you need a new heart is only the very beginning of a long journey. Dr. Sauer explained that the assessments required to qualify for the transplant list are rigorous.
"Just qualifying to go before the transplant committee who makes the final decision to put you on the transplant list involves a long and sometimes grueling process. The patient endures a battery of medical tests, and there are also psychological tests and a lifestyle assessment. We often call the experience a stress test for your soul."
One of the most critical needs to be a good transplant candidate is a strong support system. "Without a good support system, whether that's family or friends who will be there for you, drive you to appointments, advocate for you, etc., you just won't get on heart transplant list. Kyle's wife, Jill, is an example of the kind of strong advocate that is hugely helpful to a successful outcome. We consider the family to be a crucial part of the healthcare team. It takes the input and attention of a team and many minds," Dr. Sauer says.
Once Kyle made it on the transplant list, he was told he'd probably be in the hospital for 2-3 months. While some patients on the list are able to go home and wait to be called, Kyle was too ill to leave and was listed as "high priority status."
Waking up to a new life
Kyle only had to wait 10 days to get a heart, and remarkably, he went home just 10 days after receiving it. He says he could tell the difference in his strength as soon as they began waking him up the next day after surgery. A day and half later, he was making it down the hall with a walker. He has nothing but wonderful things to say about his experience at The University of Kansas Health System.
"I can't say enough good things about Dr. Sauer. He's always made time for me and never made me feel rushed. The same goes for Dr. Travis Abicht, my surgeon, and also for my transplant coordinator. As for the nurses, they didn't just take care of me, they took care of my family, too," he says.
Kyle is currently on an "every 3 months" regimen for rejection testing and bloodwork. He is also monitored for potential side effects that we don't often hear about, such as skin cancer, bone density issues and migraines from the medications. "And once a year for the rest of my life, I'll do an all-day appointment for the big tests and check-ups," Kyle adds.
Honoring his donor's family
One of Kyle's goals was to meet his donor's family. It's not an easy request due to privacy rules, but Midwest Transplant Network, the organization that helped coordinate Kyle's transplant, encourages interested recipients to write a letter. The letter is then passed on to the donor's family. The family decides if they'd like to get in touch with the recipient.
"We sent a letter 6 months after my surgery and didn't hear anything. Midwest Transplant Network suggested we send a second one with some photos, which we did. Several months went by and we still didn't hear back, so I kind of gave up," Kyle says.
Then one day, a letter came from the donor's mother.
"We communicated by email for quite a while. I learned her son was 35 years old, had 2 daughters and was from Missouri like me," Kyle says. "He had a health issue that caused his death but did not damage his organs. In fact, several of his organs were donated. He had made it known to his family that he wanted to do that, so they honored his wishes."
Kyle got the chance to meet the donor's mother, sister and the mother of his daughters in August 2019. "I told them the hardest thing I felt was guilt. They said, 'we don't want you to feel that. We're glad you were able to live.' His mom said her son had made the decision be an organ donor a long time ago."
Spreading an important message
Kyle now speaks to groups about organ donation and helps people understand how it works and why it's so critical. At any given time, there are about 3,000 people in the U.S. waiting for heart transplants, and unfortunately, there aren't enough hearts for all of them. Kyle says the most important thing is to make sure your family knows your desire to be an organ donor so, if and when the time comes, they won't hesitate to make that happen.
"There are so many myths about organ donation. I want to help people understand the number of lives that can be saved by a donor, and how critical the need is for donor organs in our country."
Today, Kyle's life is all about living in the moment and looking forward to a long future with his family.
"Being able to be with my family and watch my kids succeed, celebrating my 25th anniversary on a Hawaii beach and possibly have grandkids down the road – those are my big plans for the future now," Kyle says.