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Couple’s transplant journey continues by helping others

Jul. 25, 2019, 9:32 AM

Elizabeth “Betsy” Barbour and her late husband, Richard, created a fund to help support Vanderbilt’s lung transplant patient assistance fund.
Elizabeth “Betsy” Barbour and her late husband, Richard, created a fund to help support Vanderbilt’s lung transplant patient assistance fund.

by Nancy Humphrey

A dramatic improvement in health following Richard Barbour’s double lung transplant at Vanderbilt University Medical Center in 2011 was remarkable to witness, recalls his wife, Elizabeth “Betsy” Barbour.

After years of declining health due to debilitating chronic obstructive pulmonary disease (COPD), Betsy said that after the transplant on Aug. 6, 2011, the color returned to Richard’s cheeks, he began to breathe easily without oxygen and over time became active and involved.

“I can’t imagine anything that I’ll ever see in my lifetime that would be more amazing than that,” said Betsy, who, with her family, is establishing an endowment in Richard’s name through a gift plan.

Richard lived five and one-half years after his transplant.  He died at age 53. But Betsy doesn’t see his death as a failure. Instead, his transplant allowed him to live life to the fullest.

“He got to do all the things he couldn’t do before his transplant. We traveled and had lots of great visits with our family across the country. Richard did things with his friends, went to hear music and enjoyed food. He invited people over for dinner and enjoyed cooking for them. He made the most of the time he was given.

“I know that Richard’s transplant will always be the greatest miracle I’ve ever witnessed. And not even his passing changes that experience.”

 

Turning the boat around

Betsy and Richard met in 1991 in Virginia. The couple was introduced by Betsy’s roommate.

They married in 1994, lived in Syracuse, New York, for a couple of years and decided they wanted to live somewhere with milder winters. Richard, a computer programmer, got in touch with a recruiter and the Barbours ended up in Nashville in 1996.

Around 2008, Richard began having some breathing issues. “When he didn’t feel well, he got pretty good at hiding it from me. He would say his allergies were acting up, that he wasn’t exercising enough,” Betsy said.

In 2010, with his health worsening, Richard was put on oxygen. “Things started really rocketing downhill,” Betsy said. During a “very difficult” doctor’s appointment, to talk about his options, his care team first mentioned transplant.

“He was kind of in denial, and he wasn’t being honest about what was going on,” Betsy said. “He wasn’t doing what he needed to turn things around. He had to have some tough love. He was a big oceangoing vessel going off course, and it took me working with his team at Vanderbilt to turn that boat around.”

At first, Richard wasn’t sure he wanted to pursue transplant, but he finally came around to the idea. “I was afraid he’d get to his deathbed and start wishing he had done it,” Betsy said.

He was listed on the organ donor registry on June 30, 2011. The call informing him that donor lungs were available came on Aug. 5.

“I left work that Friday and stopped by Kroger. I ran into a couple of neighbors and was talking to them,” Betsy said. “Apparently my phone was ringing in my purse, but I didn’t hear it. When I got home, the door flew open and with more energy than I had seen Richard have in a couple of years, he said, ‘We’re ready to go. They called! They called!’”

Richard had written down on a Post-it note the room he was going into when he arrived at Vanderbilt University Adult Hospital and what time they expected the surgery to take place. “It’s just amazing that behind the scenes at Vanderbilt, that machine is so well-oiled. When we got there, we were admitted right into that room and the surgery took place right when they said it was going to. I still have that Post-it note.”

Richard’s transplant went well. His donor was a tall man, and Richard was the only person listed for transplant in the region who had a chest cavity large enough to accept the man’s lungs.

“I can’t say enough about the amazing community of physicians, nurses, pharmacists and the administrative team at Vanderbilt,” Betsy said. “You get to know them, and they get to know you. It’s not like you have the surgery and you’re left hanging. They walk through it with you afterward, enabling you to be successful.”

Those participating in Richard’s care included Eric Grogan, MD, MPH, Ivan Robbins, MD, Ciara Shaver, MD, PhD, and Jennifer Gray, PharmD.

After Richard’s transplant, the Barbours became connected to others who were waiting for transplants at Vanderbilt.

Betsy Barbour, center, with members of her husband Richard’s care team. From left are Eric Grogan, MD, MPH, Jennifer Gray, PharmD, Ivan Robbins, MD, and Ciara Shaver, MD, PhD.
Betsy Barbour, center, with members of her husband Richard’s care team. From left are Eric Grogan, MD, MPH, Jennifer Gray, PharmD, Ivan Robbins, MD, and Ciara Shaver, MD, PhD. (photo by Nathan Morgan)

Richard was unable to go back to work, so they turned his home office into a guest suite for out-of-town patients. Richard would often take them to appointments and wait for them while they underwent procedures.

“He made it a point to visit other patients in the hospital, to encourage them. He gave his support to those who came after him because of the people who had helped him. There are people I met through the program I will stay in touch with for the rest of my life,” Betsy said.

About a year before he died, Richard’s body began rejecting his lungs. His care team at Vanderbilt tried everything — medication and photopheresis treatments — but nothing worked. “It wasn’t like when he got sick before his transplant. That was slow and long. This happened pretty quickly.”

As his new lungs failed, members of his care team came to say goodbye. “Anytime he was in the hospital, they’d come by to see him. He loved to have his room filled with people.”

Richard died on March 18, 2017, with Betsy, his mother, Eileen Barbour, and his sister, Ann Miller, by his side.

 

A way to remember

Before his death, Richard had supported the Vanderbilt lung transplant patient assistance fund.

“Many patients get sick when they’re young and they can’t finish their education and employment comes hard,” Betsy said. “Along with employment comes benefits. Because of that, it’s a challenge for some patients to even pay for medication. Richard was a big supporter of the patient assistance fund. He wanted to help by giving money to this fund.”

Before Richard died, Betsy began to think about ways to continue that support. She knew there would be donations given upon his death, and she asked him if he wanted the donations to go to the assistance fund. He said yes.

“I thought there would be a couple hundred dollars, but there was $5,000. And then I began to wonder if there was a way to keep that going.”

Betsy contacted the VUMC development office to ask what else she could do. “Money was coming in — life insurance and such. If I was going to do it, now was the time.”

She was given multiple options for funding the endowment beyond an initial gift. Through annual payments and beneficiary designations, along with contributions from Richard’s mother and sister, the creation of an endowment in his name is becoming a reality. The endowment will support the assistance fund and lung disease research.

“I doubt that Richard would have guessed that giving to Vanderbilt on this level could be an option for us. I know he would be extremely gratified that his desire to give back can live on after him. Knowing that Richard’s endowment will continue to grow and help others is a great comfort to me, to his mother, to his sister, and to the rest of our family.”

In March 2018, Betsy came back to VUMC on the one-year anniversary of Richard’s death. She walked outside the hospital and thought about the times they sat in the courtyard together. She listened for LifeFlight helicopters and remembered hearing from Richard’s room when they would take off and land. She thought about the meals they had at the hospital with friends.

“Despite the fact he died there, the time I spent there with Richard was actually a happy time. Vanderbilt is a happy place. They’re doing wonderful work.”

To learn how you can support Vanderbilt University Medical Center through a gift in your will or other gift plan, visit VanderbiltHealth.org/giftplanning.

 

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