For Joe Rands, breathing hasn't always been easy.
After living with pulmonary fibrosis for more than 15 years, breathing became more and more difficult in the early months of 2020.
Unfortunately for Rands, a 59-year-old veteran and Utah native, the decline came hard and fast.
"I thought I was out of shape, and everyone else just thought I was lazy," said Rands. "That is, until I started getting extreme headaches, feeling lightheaded, and sluggish."
In March 2020, Rands – who lives with his wife in Kanosh, Utah, met with his pulmonologist, who quickly identified the problem: low oxygen levels, possibly brought on by pneumonia. A follow-up appointment landed Rands in the ER, where he had a CT scan of his lungs. Just weeks later, he was back in the ER again, this time being admitted to the hospital for three nights.
"The first time I went to the ER they had me on two to four liters of oxygen as needed," he said. "The second time, I was up to six liters of oxygen, around the clock."
Rands' lungs continued to quickly decline, and three months later, in September 2020, he was on eight liters of oxygen.
His physician referred him to a pulmonologist who later delivered the news to Rands: the scarring on his lungs was severe and quite advanced, and there was no cure or possible treatment available.
Only one option remained – a bilateral lung transplant – and even if Rands was eligible for this option, it would be a long, tough road.
But Rands was up for the challenge.
Rands was referred to the University of Utah Health Lung Transplant Program for testing and evaluation. It was at this early point on the journey that Rands saw the positive impact of different healthcare systems and teams coming together for the good of the patient.
And Rands' team was about to get much bigger.
After being referred to the lung transplant program at U of U Health, he met with Sanjeev M. Raman, MD, associate professor of medicine in the pulmonary division at University of Utah Health, and one of just three transplant pulmonologists in the state of Utah.
"Dr. Raman is so cool, and he explains things so well," said Rands. "He let me know my breathing was both restricted and obstructed – the double whammy. I was definitely a potential candidate for surgery."
At this point, Rands started the testing process to determine his eligibility for a bilateral lung transplant.
"The testing – that's something else," said Rands. "It's a grueling, time-consuming process and it's not for the weak. You have to decide at that point to not give up. You have to decide to live. It sounds simple, but you really need to want it."
And although he knew the road ahead wouldn't be easy, he made the decision that he was going to live.
Because Rands is a veteran, all his medical needs are covered by the Veterans Health Administration, a branch of the U.S. Department of Veterans Affairs (VA). This integrated health care system serves 9 million veterans every year, providing care at more than 1,200 health care facilities across the United States.
And although there is a VA facility located in Utah – the VA Salt Lake City Healthcare System – there are only two transplant programs within the VA system: one in Madison, Wisconsin, and the other in Seattle, Washington. As a rule, all VA patients in need of a transplant – no matter their location – are relocated to one of these two locations.
"When we look at the VA medical system, they really do such a great job taking care of our veterans," said Raman. "But for Mr. Rands, relocating to one of the VA lung transplant centers in Washington or Wisconsin would have been a great hardship."
Thanks to the Community Cares Act, veterans are allowed to seek care from other local healthcare systems if the service they need is not provided by their local VA.
"Even though there isn't a VA lung transplant center here in Salt Lake, that doesn't mean we can't help our veterans," said Raman. "We submitted an application for Mr. Rands and the VA approved him to be transplanted at our center. We have an amazing partnership with our local colleagues at the George E. Wahlen VA Medical Center in Salt Lake City including the Chief of the VA Pulmonary Division, Dr. Mustafa Mir-Kasimov, and so we were able to ensure that he received exceptional care, as close to home as possible, and with ongoing collaboration."
Getting Rands the care he needed as close to home as possible was a good thing, as his health was quickly worsening.
"At this point it's January 2021 and I can feel my body deteriorating," said Rands. "I finally got on the transplant list, and then had to wait for the right set of lungs."
Patients on the transplant list are required to live close to the University of Utah Hospital, so Rands and his wife left their home in Central Utah and moved in with his sister in Saratoga Springs while he waited for the phone call. He ended up waiting five months for the perfect set of lungs.
"When Mr. Rands was put on the transplant list, since he is very tall, it became harder to find a size match," said Raman. "I always tell my patients that it's like the Goldilocks story. It has to be just right. The blood type and tissue match have to be correct, along with the size of the lungs."
And while the average wait time on the lung transplant list is two months, Rands waited five.
"I just got sicker and sicker," said Rands. "But it came through at the right time. I got the phone call and was at the hospital the following morning at six am."
By the time Rands was prepped for surgery, he needed 15 liters per minute oxygen supplementation– more than four times the amount of oxygen he was on just months earlier.
"It wasn't enough," said Rands. "My body needed oxygen bad."
Rands underwent bilateral lung transplant surgery on May 23, 2021. Craig Selzman, MD, Chief of the Division of Cardiothoracic Surgery at the University of Utah performed the surgery. He was assisted by Cardiothoracic Surgeon Hiroshi Kagawa, MD. Thoracic Surgeon John R. Stringham, MD, Surgical Director of the Lung Transplant Program provided both pre- and post-operative care for Rands.
"I had such a great team of providers taking care of me," said Rands. "Within five days after surgery, I was off oxygen completely, breathing room air."
Just as it is with every transplant patient, every member of the lung transplant team – pulmonary medicine doctors, transplant surgeons, transplant coordinators, nurses, pharmacists, social workers, registered dietitians, financial specialists, and pulmonary rehabilitation therapists – came together to care for Rands.
"There are so many people involved in the process that it really is an all-hands-on deck situation," said Stringham. "During surgery, there's a team of eight to ten people with the recipient. And another portion of the team is looking at the donor making sure the lungs are good quality, removing the lungs from the donor and then bringing the lungs to the recipient to transplant. And all of this is just in the operating room."
Although transplantation starts with the surgery, it doesn't end with surgery. For many patients, this is where the real work begins. Medication management, weekly clinic visits, and physical therapy are just a few of the post-operative hurdles to tackle.
"Being a lung transplant patient is like running an ultra-marathon," said Raman. "It's a long race, and after surgery we are just barely out of the starting line."
Rands is committed to putting in the work. Transplant patients are required to do 36 sessions of physical therapy. Rands responded so well that he finished early, after just 24 sessions.
"My legs were pretty weak, because for a long time I wasn't able to use them," said Rands. "It's going to take a bit of time to get back my strength, but I'm making progress. It's all part of staying alive."
And although there have been a few hiccups along the road to recovery, Rands' decision to stay alive remains unshaken and he is feeling better than ever.
"I have been given an extension of my life," he said. "I wouldn't be here if it weren't for my faith, my wife, my donor, the VA and U of U Health."
And breathing? It's never felt more natural to Rands.
"I got a whole set of lungs from another person, and I can breathe again. Now – especially lately – I take this deep, deep breath in, and even deeper in, and I don't remember ever being able to do that."
Joe Rands served in the United States Marines Corps, 9th Communications Battalion, as a Lance Corporal. He transported communications equipment while stationed at Camp Pendleton, CA, from 1981 -1984.