Lung transplant patients connect at Mayo, take trip of a lifetime

Barry Venn and Phil Strom take a trip they didn't think was possible after lung transplants.

Two men with similar stories crossed paths in a Mayo Clinic support group and quickly formed a friendship. Today, they are proving to themselves and their families that physically demanding adventures are possible years after lung transplant.

Phil Strom and Barry Venn are alike in many ways.

They both live in Southeast Minnesota and share similar hobbies, and about three years ago, both underwent lung transplants.

Had it not been for Mayo Clinic, the two men probably would never have met. Now they are good friends and accomplishing things they never dreamed of after their transplants.

The News Center team connected with Phil and Barry to learn about the health journeys that led them to Mayo Clinic and to each other.  

Phil's story

In 2011, Phil decided to see a local physician in his then-hometown of Elk River, Minnesota, about a persistent cough he couldn't shake. A CT scan revealed Phil had pulmonary fibrosis.

Four years later, while spending a year as an interim pastor for Evangel United Methodist Church in Rochester, he learned one of the church's members was a respiratory therapy coordinator at Mayo Clinic.

"I confided in him that I was diagnosed with pulmonary fibrosis a few years prior," Phil says. "He encouraged me to visit with a pulmonologist at Mayo Clinic."

Phil's initial Mayo Clinic visit was in 2016. A repeat CT scan at that time showed no significant changes in his condition.

"Pulmonary fibrosis has an unpredictable pattern. Sometimes it worsens rapidly, sometimes slowly, and sometimes it can remain unchanged for a while," Phil says.

He had no significant changes until 2018.

"I began experiencing increased shortness of breath when traveling in some higher altitudes," Phil says.

This time, when Phil returned to Mayo Clinic, he learned his condition was worsening. He began having more frequent appointments to monitor his condition.

The culture of care, of putting the patient's needs first — you see it in everyone who works there. Having that kind of a team was a huge blessing.

Phil Strom

"I grew confident in my highly professional care team. They stayed ahead of any changes in my scans and kept me informed of my best options," Phil says. "The more challenging my illness became, the more significant the investment Mayo made in me."

Eventually, Phil spent six days at Mayo Clinic being evaluated for a lung transplant. He was approved for a transplant but was hesitant to go on the active list right away.

"I had some fear of the unknown," Phil recalls. "A lung transplant is a big operation, and I was still managing OK with my wife as my primary caregiver."

But his health continued to decline.

"I began requiring supplemental oxygen to live," Phil says. "My quality of life was no longer good, and I decided in June 2020 that it was time to go on the list."

On Nov. 25, 2020, he got a call that Mayo Clinic had a lung for him, and he had a few hours to get to Rochester for the procedure.

The transplant was successful, and Phil attributes that success to his capable and caring medical team.

"The care is so amazingly personal at Mayo Clinic. It's almost beyond description," Phil says. "The culture of care, of putting the patient's needs first — you see it in everyone who works there. Having that kind of a team was a huge blessing."

Barry's story

Barry's wife, Mary Harkins, first noticed he was more out of breath than usual in the fall of 2020.  

"He got sick so suddenly," Mary recalls. "In September, he was hiking with the grandkids, and in October, he went downhill fast. There was nothing we could think of that could've caused it."

Barry made an appointment with his local primary care physician to get checked out. His physician took his vitals, listened to his heart and lungs, and ordered a chest X-ray.

"He was surprised with how bad my lungs had become and suggested I go to Abbott or Mayo Clinic for follow-up," Barry says.

He headed to Abbott first due to its proximity to his work in St. Paul, Minnesota, but when things moved slower than expected, he headed to Mayo Clinic.

"Mayo Clinic started same-day treatment, which impressed me," Barry says. "Unfortunately, the medication they hoped would stop whatever was attacking my lungs did not work."

So he began testing to get on the transplant list.

"That only took a week," Barry recalls. "I was very sick."

My care team was unbelievable. It's hard to find words. I was in the best hands in the world and didn't worry about anything going wrong.

Barry Venn

Barry was approved for the transplant list, but he struggled with the decision to go through with the procedure.

Unlike Phil, who headed to Rochester when he was informed there was a lung there for him, Barry was told that if he pursued a transplant, he needed to be admitted to the hospital and wait there for his lungs.

"I was like, 'Well, do I want to spend my last year in a hospital bed?' because I didn't know if I was going to make it through it or not," Barry says.

After talking with his family, he decided to proceed.

Barry ended up spending only three weeks in the hospital before his transplant.  

"They found me a set of beautiful lungs, and on March 5, 2021, they did the operation," Barry says. "My care team was unbelievable. It's hard to find words. I was in the best hands in the world and didn't worry about anything going wrong."

Before the operation, Barry was on high-flow oxygen. "I couldn't breathe on my own at all," he says.

"I remember waking up after the operation and taking that first breath," Barry says. "I'll never forget that feeling."

Finding support, forming a friendship

While in Rochester, Phil and Barry learned about a Mayo Clinic support group for heart, lung and kidney transplant patients. The group meets weekly over Zoom and includes patients waiting to get on the transplant list, patients who underwent a transplant operation decades ago, and people at all points in between.

Phil joined the group before his transplant, while Barry attended his first meeting about two months after his procedure.

"By then, I was starting to wonder what my future would hold, and I thought that would be a good place to get some information," Barry says.

The group was a place for Phil and Barry to learn firsthand about the transplant experience.

"The staff at Mayo did a great job preparing me, but these people have lived through it, so they have a different and valuable perspective," Barry says.

If you asked me before my transplant, I probably would've said my canoeing days were over. ... With the fibrosis and the shortness of breath, I couldn't rake my yard, much less carry a canoe.

Phil Strom

Phil and Barry's paths intersected in 2021, and they quickly formed a friendship.

"I learned Barry lived about 15 miles from me and asked if he wanted to meet for coffee outside the group," Phil says.

"My wife and I got together with Phil and his wife and talked for about an hour," Barry recalls.

Through their conversation, they discovered their shared interest in canoeing in the Boundary Waters Canoe Area Wilderness in Northern Minnesota.

Both had been several times but weren't sure it was something they'd do it again post-transplant.

"If you asked me before my transplant, I probably would've said my canoeing days were over," Phil says. "A canoe trip in the Boundary Waters is physically demanding. With the fibrosis and the shortness of breath, I couldn't rake my yard, much less carry a canoe."

But Phil and Barry both felt up for the adventure after their transplants, so they began preparing for the trip of a lifetime.

Adventuring together in the Minnesota wilderness

In 2022, Phil and Barry took an old canoe to local lakes several times to test the waters and their physical capabilities.

"We wanted to see if we could keep our balance — that was the main thing," Barry says. "We didn't have any issues."

So, in August 2023, they traveled about 250 miles north to the Boundary Waters. Along for the ride were Phil's brother and Barry's friend, who agreed to help carry the canoes and respond in case of emergency.

The trip consisted of several daylong canoeing adventures.

"Canoeing the boundary waters is rigorous, even for people who aren't limited," Phil says. "So we brought along capable help to do the heavy lifting and designed the time on the water to make it manageable and safe."

Overnights, they stayed nearby in Barry's cabin.

"We had a wonderful time," Barry says. "It was one of our biggest successes after the surgery — discovering we could do this again."

Staying connected and supporting others

Since their wilderness adventure, Phil and Barry have continued to stay connected, and both still regularly attend the Mayo Clinic support group meetings. Now, they can provide perspective and encourage others.

"My experience, especially being as successful as it was, really does help alleviate some of the fear and apprehension that people starting their journey have," Barry says.

Their advice to others? Set goals. Cherish the little accomplishments because there will be a lot of them. And if you do something you thought you'd never do again, like canoeing in the Boundary Waters, brag about it.