Operation Donny and Marie: Double lung transplant recipient grateful to be alive

May 18th, 2018

 

Linda Regis is pictured in front of Kissing Camels at the Garden of the Gods, with Pikes Peak in the background
Linda Regis of Colorado Springs received a double lung transplant at UCHealth’s University of Colorado Hospital.

On a good day, Linda Regis would rise in the morning, thank her maker for another day and embark on a few things on her “to do’’ list, which was short by most standards.

Make the bed. Do the dishes. If she could accomplish those simple things that many people take for granted, Regis would feel immense satisfaction.

Living with severe COPD – Chronic Obstructive Pulmonary Disease – required her to always consider how the disease would affect activities, a negotiation that often left her homebound.

A native of Colorado Springs, Regis graduated from Widefield High School and sang in a small band, traveling to small gigs at the VFW and other local spots. She dreamed of meeting her idols, Donny and Marie, and visiting the Grand Ole’ Opry to see the place that turned unknown musicians into the greatest in their generations.

“Music is my passion,’’ she said. “And so is gardening.’’

The lonely feeling of COPD

COPD, however, made the former cigarette smoker feel as though she was being crushed from the inside, like an elephant was sitting on her chest – she couldn’t get any air. By 2011, three years after her COPD diagnosis, Regis could no longer work at her job where she formatted documents for a government-contracted company.

Linda Regis is pictured in front of a red rock in Garden of the Gods Park.
Linda Regis, who could barely make it to her mailbox before double lung transplant surgery, goes for a walk in Garden of the Gods Park in Colorado Springs.

Though her three children and four grandchildren frequently visited her home in Colorado Springs, COPD kept her isolated. She had divorced, and she relied on her security blanket – an oxygen tank cranked on high – for almost anything she did.

Regis said that having COPD forced her to find a new way to live. She entertained herself by watching DVDs, listening to music and joining online COPD support groups and posting inspirational quotes on Facebook. She met a wonderful man on line, Marvin, who also had COPD, and the two became online sweethearts.

“I knew we would never meet, but we encouraged each other. We had so much in common,’’ she said. Marvin surprised her one day by making it to Holden Beach – a place he loved – one last time. On the beach, he drew the shape of a heart in the sand and wrote Linda’s name inside the heart. He surprised her and posted it on Facebook. Unfortunately, Marvin passed away in February 2015.

“COPD can be a very lonely disease because it secludes you,’’ Regis said. “After a while, you stop getting invitations because people figure you just can’t do it – you can’t make it anywhere because you don’t have any air.’’

Regis, however, never gave up hope. She visited a doctor regularly but her condition worsened and she and her family began to realize that a double lung transplant was all that might save her. She began praying for that gift to come, and resolved to have patience.

“I’d wake up and think ‘Today is a new day. Keep moving forward,’ ’’ she said. “And I’d do whatever I could that day – make the bed, do the dishes. Sometimes, I’d plant a flower in a pot since I couldn’t do my gardening anymore.’’

On the days that she took a shower, Regis generally limited all other activities for that day.

“Taking a shower is so hard for people with COPD. It takes every ounce of energy you have because you have to get up and you have to move around,’’ she said, mimicking the act of washing hair. “It’s a chore.’’

Pulmonary rehab

Regis participated in  pulmonary rehabilitation exercise classes and was doing all she could to maintain the limited lung function that she had. On Aug. 13, 2016, her condition had deteriorated to the point that doctors at UCHealth’s Comprehensive Lung and Breathing Program decided it was time. On that day, she was placed on a list of organ recipients. She needed two lungs.

She began to take the steps necessary to become identified as an eligible candidate for a lung transplant at UCHealth’s University of Colorado Hospital in Aurora. Her name was entered into a computerized waiting list to assure equal access and fair distribution of organs that become available. The lung is given to the best match, based on blood type, size, tissue, recipient’s medical condition and cross match compatibility.

Linda Regis goes for a walk in Garden of the Gods Park
Linda Regis goes for a walk in Garden of the Gods Park.

Her will to live remained strong, despite the fact that COPD still had a grip that left her isolated.

On Nov. 2, 2016 Regis’ fortune turned. She had graduated that day from pulmonary rehabilitation classes, but that would not be the biggest blessing that day. While she and her friend were celebrating graduation from the rehab classes, Regis checked her cell phone. There was a voice mail from a donor coordinator at UCH.

“We think we have a match,” the coordinator said  after introducing herself. “I am trying to reach you regarding a possible lung transplant. I will go ahead  and call your next contact number but if you receive this message please call me back.’’

Regis called her back, explained that she had just finished lunch, when the coordinator told her: “Don’t eat anything else. Stop eating and drinking. Go home and wait for me call around 6 p.m.’’

That afternoon, Regis filled with excitement as she prepared for a major surgery – a double lung transplant. She thought of her donor and how wonderful the person who was providing her a second chance of life must have been. She knew nothing more about the donor, only that he or she had “good, healthy lungs.’’

About 9 p.m. that night, after receiving a call from University of Colorado Hospital, Regis and her children made the drive from Colorado Springs to UCH in Aurora. Along the way, one of her children asked, “Mom, are you scared?’’

“No,’’ she quickly answered. “I’m not.’’

Everything is going to be ok

“I wasn’t scared because I knew everything was going to be ok. I was more nervous for the people who were worried about me,’’ she said months later.

Such a surgery usually lasts from six to 12 hours. In her case, the surgery went much quicker, which reassured her family.

a photo of Dr. Joseph Crossno
Dr. Joseph Crossno

“I’m nobody special,’’ she said. “But every day I thank God for giving me a new day, and I thank my donor and his or her family – I don’t even know the gender. All I know is that when I went there, I was told that I would receive two very good, healthy lungs.

“I try to honor my donor every day. I refer to my donor as ‘Angel Friend’ and thank the person for allowing me to borrow these lungs every day. They are borrowed from someone very special,’’ she said.

A day after surgery, after the grogginess from anesthesia tapered off, Regis asked from her hospital bed if Peyton Manning, the great NFL quarterback who led the Denver Broncos and the Indianapolis Colts to Super Bowl wins, was in the house. She remembered seeing and hearing him on television and radio commercials for UCHealth.

And she couldn’t sit still.

“I was dancing in my bed to Justin Timberlake to the song, ‘Can’t Fight the Feeling,’ ’’ Regis recalled. “My sister said, ‘stop doing that, you’re going to pull your stitches.’ ’’

She remembers seeing a platoon of doctors, and is grateful to Drs. Todd Grazia, Joseph Crossno, Martin Zamora, and others.

“The different people, the doctors and the nurses who pass by your way, they were all just amazing,’’ she said. “From the doctors to my coordinators, the nurses and all the staff on the Transplant 7th floor – they’re awesome.’’

Linda Regis is pictured in Broncos gear.
An avid Broncos fan, Linda Regis is grateful to the donor who enabled her to have a double lung transplant.

Regis went home to Colorado Springs and followed her doctors’ orders but by June 2017, she began to feel lousy with pneumonia, a terrible headache, shortness of breath, tightness in the chest, nausea, fever and fatigue.

Dr. Crossno checked Regis for CMV or cytomegalovirus, which is a common problem among patients who have received an organ transplant. Sure enough, blood work and a branchostomy showed she had the virus, and she was admitted to the hospital.

“The problem with the virus is that it causes damage to the transplanted organ and it is often irreversible,’’ Dr. Crossno said. “It basically causes lung scarring.’’

Regis, though, was adamant with Dr. Crossno about one thing – he needed to get her out of the hospital pronto. Regis and her sister were to be in Las Vegas in a week. Regis’ sister had finagled back-stage passes to meet the megastars.

“We called it Operation Donny and Marie, and I told her that we would get her out come hell or high water,’’ Dr. Crossno said.

Dr. Crossno and other physicians treated her with immunoglobulin specific against the CMV, which clears the virus, and we changed her anti-viral medications,’’ he said.

After eight days in the hospital, Regis and her sister, Janet, were on a plane to Las Vegas to see Donny and Marie Osmond. Somehow, Janet got back-stage passes for Regis to meet Donny and Marie – her musical idols — face to face.

While she was in Las Vegas, Regis got a surprise phone call from Dr. Crossno.

“I was just calling to see if she was alright,’’ he said.

Regis was as good as new and, a few months later, she traveled to the Grand Ole’ Opry in Nashville and toured the historical country music venue.

Every three months, she visits Dr. Crossno and he checks her lung f unction, lab work and x-rays.

Her double lung transplant was so successful, she does not need to wear oxygen during the day, but she wears it at night and will take it with her if she travels to a high-altitude location, such as Rocky Mountain National Park.

“I try to do as much as I can to honor my donor,’’ she said. “Do you know how amazing it is to be able to walk to the mailbox? It’s just as amazing as making it to Vegas or Nashville.

“When you walk on the other side of life – because that’s what this is to me – you think of the miracle of the donor, and the miracle of these doctors’ hands, that they can do this. You walk out of that old life into another life. ’’

She said she hopes to inspire people to never give up.

“When you are down on the ground and then you can walk in the mountains and smell the pine trees, and feel the air and hear the birds, there is nothing like it. My hero lives inside of me. This person has given me a second chance.’’

She’s checked off a few things on her bucket list, Donny and Marie and the Grand Ole’ Opry. In the spring and summer, she gardens.

Last spring, she dug a hole in her back yard and planted an Iris bush in honor of her donor. Every summer she’ll look forward to it blooming with a kaleidoscope of color.

About the author

Erin Emery is editor of UCHealth Today, a hub for medical news, inspiring patient stories and tips for healthy living. Erin spent years as a reporter for The Denver Post, Colorado Springs Gazette and Colorado Springs Sun. She was part of a team of Denver Post reporters who won the 2000 Pulitzer Prize for breaking news reporting.

Erin joined UCHealth in 2008, and she is awed by the strength of patients and their stories.