photo by: Contributed

David Jensen looks into the eyes of his granddaughter Andrea.

David Jensen’s double lung transplant nearly 10 years ago did more than save his life. It changed it — in ways he never imagined, even when he was perilously close to dying and clinging to every last little dream.

It’s an experience the 63-year-old is eager to share so that others can truly grasp the vital importance of organ donation.

In 2014, Jensen was waiting for a lung transplant — desperately, but not passively, waiting. The life-giving organs did not seem likely to just come to him. So he tried to go to them, moving around the Midwest twice before finding the “best set of lungs.”

In 1998, Jensen was diagnosed with Alpha-1 antitrypsin deficiency, or AAT, a genetic disorder in which the liver fails to release a protein that protects the lungs from inflammation caused by infection and inhaled irritants. The condition can also cause problems for the liver itself. In the years to come, Jensen’s lungs deteriorated until the only remaining option was to find two new lungs.

Jensen spoke to the Journal-World in 2014 as his dire condition boosted him to No. 1 on the transplant list. He talked about how the disorder had stolen his strength, his livelihood and his independence.

Now he talks about how sweet life is and how grateful he is that someone’s gift gave him so many more years. Years to be with his four kids. To walk his beloved dog, Pete. To skydive.

“I get to be able to observe things that I wouldn’t have been able to see before. I have a new business (property maintenance and management) that I’m running now, and I get to watch my children live their lives, my grandchildren now living their lives,” Jensen said. “My babies are having babies.”

photo by: Contributed

David Jensen’s grandchildren and step-grandchildren.

With five grandchildren and another on the way, Jensen said that seeing family members he might never have met may be the best gift he received from his anonymous donor.

The greatest lesson he received, though, was patience.

Early in 2014, Jensen was waiting for a set of donor lungs to come to a hospital in Denver. At first he tried living in Lawrence with a planned emergency flight to Denver for when lungs became available, but eventually he just moved to Colorado.

At one point, the hospital called with news that a pair of lungs might be available, but when Jensen told them he had just recovered from shingles, the person who called said, “Oh, OK, we’ll get back to you,” but never did. One of the more frustrating things about waiting for organs, he learned, is that you have to be in optimal condition, relatively speaking, to increase your chances of a successful transplant.

“I waited in Denver for nine months, and there were no lungs available,” Jensen said.

While waiting, Jensen began to look at other transplant surgery centers. He said he found a hospital in Indianapolis that had performed three times as many donor surgeries as the one in Denver the year before.

Jensen then moved to central Illinois, where he had family living nearby, about two hours away from the hospital. Then, for a second time, Jensen said he was called about a potential transplant but a minor health problem prevented the surgery.

photo by: Contributed

David Jensen skydiving in November of 2023.

photo by: Contributed

David Jensen’s dog Pete.

“I went to the hospital and had a CT scan through my chest and they found just a little tiny bit of infection … And they said, “Well, we’re going to have to send you home. We found a little infection,’ and that just took the air out of my tires,” Jensen said.

A few months later, Jensen recalled, he was on oxygen 24/7 and couldn’t ride a bike more than 100 feet.

“I was trying to ride with an oxygen tank strapped to the back of it,” he said. “I remember I was just trying to keep myself going and keep myself focused on something else.”

Then one day, after some angst over the bike, he walked into his house and answered a phone call.

“I remember getting off the bike and coming inside. And the third time they called I was real angry, and I said, ‘What the hell are you calling me for? You’re bothering me,'” Jensen said.

But that call was it. Finally, that was the call.

“The two times I was passed up, it really left me hopeless, honestly. But then the third time, when I did get the transplant, the doctors told me it was one of the best matches that they could have found for me. So, I got the best set of lungs I could have received only by being passed up two times from other donors,” Jensen said.

What stands out to Jensen now about the surgery are a nurse with an “angelic voice” who assured him everything would be OK, the two scars on his back where the surgeon made his incisions and, now, the immunosuppressant medicine that he has to take for the rest of his life to keep his new lungs working.

“When they removed my old lungs, they looked just like pieces of chopped liver. They weren’t an organ. They were just mush,” Jensen said.

photo by: Contributed

David Jensen the day his breathing tube was removed after his lung transplant.

It’s an image that has stuck with him, right alongside a feeling that has stuck with him: survivor’s guilt.

“It’s like when a soldier comes home from war and all his buddies have died and he’s the only one alive. He wonders why he’s still alive,” Jensen said.

After the surgery he was at the transplant center for a checkup, and while he was waiting he could see into a conference room with the hospital’s latest batch of transplant candidates. He said he knew that out of the 30 people in the room, the hospital would probably only select two of them as viable candidates.

“I was just sitting right there watching the people inside of the room and seeing myself in there, realizing I was one of the two people who got picked, and I went through survivor’s guilt wondering why,” Jensen said.

Through therapy he learned to accept that the so-called guilt wasn’t from having done something wrong but, rather, was a true feeling of compassion.

“I learned that survivor’s guilt is the deepest empathy a person can feel,” Jensen said.

Jensen said he now wants to connect with other transplant survivors in the Lawrence area to help raise awareness about the need for organ donation and also to raise awareness about the disorder that he has.

“Other people who may have emphysema, I understand now, that there’s a high percentage they could have Alpha-1 antitrypsin deficiency and could be treated for it,” Jensen said.

He said identifying the disorder in its early stages could prevent the worst from happening. Members of his family have since tested positive for the deficiency, but with that knowledge they can plan for a better future.

“I grew up in a world of blue-collar work where I was contaminated. I smoked, drank alcohol and I was a welder for a while, so that was not good for me,” Jensen said.

For those facing similar despair over their health and the wait for life-saving organs, Jensen has a succinct message: “Don’t give up. Don’t give up.”

And for those considering signing up as organ donors, an even more succinct one: Do it.

April is Donate Life Month when supporters work especially hard to raise awareness for organ, eye and tissue donation. To register to donate or to learn more about the benefits of donating visit www.donatelifeks.com.

photo by: Chris Conde/Journal-World

David Jensen on April 5, 2024, in Lawrence.