Profile written by Dave Davis.
Dave is a former reporter for The Plain Dealer, liver transplant recipient, and now a volunteer at Transplant House of Cleveland.
100 Days in Cleveland
As an oncology nurse at a small community hospital, Kathie Holmes is all too aware of how a person’s life can change in an instant, with a single diagnosis. She’s seen it many times. As the wife of a man whose lungs were destroyed by COVID-19, she’s also aware of the uncertainty severe illness brings, of the financial hardships, and the ongoing struggle to be heard. She’s lived it.
And Kathie knows the lifeline, both financially and emotionally, that the Transplant House of Cleveland provides to guests who are on the often-bumpy road to an organ transplant. She spent 100 nights at the Transplant House, from Feb. 27, 2021, to June 8, taking part in counseling sessions, community dinners, caregiver get-togethers and more.
The Transplant House, located in Cleveland’s vibrant University Circle, has provided affordable housing and support to more than 1,200 families – a whopping 38,000-plus nights of stays – since welcoming its first guests in July 2014. It had just seven apartments that first year, 15 the next. Now there are 25, fully furnished and comfy. It’s there for patients of University Hospitals as well as the Cleveland Clinic.
Kathie spent her days mostly in Brian’s room on the 5th floor of the Cleveland Clinic’s Q Building, the Glickman Tower, helping him learn to walk again and get strong enough for the transplant that they hoped would come. She was there most days from just after sunrise to when the last shuttle left about 7 p.m. Exhausted, many nights she just fell into bed. But the Transplant House staff was always there with a kind word or gesture, listening, helping.
“Who does this?” Kathie asks rhetorically, underscoring their kindness. “I mean, really, who does this?”
Family, she and others say. This is the place where hope lives.
“I was very broken when I got there, and those are just the best words to use to describe it,” Kathie says. “My whole life had literally been turned upside down.”
She had little money, her credit cards were “maxed out” – the result of her husband’s lengthy hospital stays – and she just didn’t know what to do, she says. Someone suggested she call the Transplant House.
Elaine Turley still vividly remembers the first community dinner at the Transplant House in its opening days. Elaine is its executive director.
“I actually made the meal because I knew that bringing a meal was a centerpiece of this type of housing opportunity,” says Elaine, also one of the non-profit’s co-founders. “And I just remember literally the hair on my arms standing up … to actually see our guests sitting around the table and getting to know each other, helping each other, laughing about the most random of things. And I remember some of the people who were at that table and who have remained friends still.
“So that’s the shared journey, as we say,” says Elaine, who traces her passion for the Transplant House to her father’s experiences as a liver transplant patient in the early ‘90s. “We just create the space. And of course we create tone, too, by the way we interact with people. But they then take care of each other.
“It’s just holding tight to each other on a ship that’s on a really rough ocean.”
A doctor in the St. Louis-area diagnosed Brian Holmes with COVID-19 on December 14, 2020, just three days after the U.S. Food and Drug Administration issued the first emergency use authorization for a COVID-19 vaccine. Brian and Kathie were a couple always in motion, with work and an active family, including two children – a married daughter, her spouse and two young children, and a son and his fiancée. Brian worked on big construction sites with the carpenters union, hard but satisfying work. He enjoyed grilling steaks and camping.
That was all about to change.
By Christmas Eve, Brian had gotten so sick that Kathie had to take him to the emergency room at St. Clare Hospital, where she worked. He was admitted. By New Year’s Eve, he had developed pneumonia and his condition had worsened. He was in the intensive care unit on a ventilator. As others rang in the New Year, Kathie got a call from the hospital.
“You can come up,” she remembers a familiar voice saying. Kathie knew what that meant.
Brian made it through a difficult night and was transferred New Year’s Day to the larger St. Louis University Hospital, where he would spend the next 57 days on a an ECMO machine, which is similar to the heart-lung by-pass machine used in open-heart surgery. The treatment pumps and oxygenates a patient’s blood outside the body, allowing the heart and lungs to rest. He also was on a ventilator.
Brian was heavily sedated at St. Louis University Hospital, and doesn’t remember much. “He had a birthday when he was in ICU and didn’t even know it,” Kathie says. He slept right through it. And then he slept through our wedding anniversary and my birthday.”
Today, it doesn’t bother Kathie a bit. She laughs about it. “My sister and I have this running joke that we never tell the truth about our age,” she explains. “I’m now 55, but because he slept through my birthday, he was still telling people I was 54.” (Kathie is clearly enjoying this). “And I’m like, ‘See— I just LOVE you.’”
Then the Cleveland Clinic stepped in. Doctors there agreed to evaluate him for a possible double-lung transplant, his only real hope for survival. They arranged for a jet to bring him to Cleveland on Feb. 25. By then, Brian had improved enough to come off the ECMO machine, but he still needed a ventilator. Cleveland Clinic doctors dramatically reduced his sedation, so he was now alert and able to communicate.
Kathie Holmes spent her second day in Cleveland making calls to find a more permanent place to stay. The Transplant House was on her list. She will never forget her first conservation with Amy Eugene, the operations manager.
“When I called her,” Kathie recalls, “I’m like, ‘Hi, Amy, my name is Kathie Holmes. I’m here because my husband’s being evaluated, I think, for a lung transplant … He got COVID and now he’s on life support.’ She’s like, ‘You know what, we can talk about this when you get here. I can’t wait to meet you.’
“And it was like, ‘Oh my God, I didn’t have to go through my whole story. I didn’t have to go through this horrendous story that I couldn’t even get through without lots of tears.’”
Kathie’s mother had come along to help her for a couple of weeks. The pair grabbed their three overpacked suitcases and caught a shuttle for the short drive to the Transplant House.
“Amy literally was standing outside waiting for us. She had come out to help with our bags,” Kathie remembers. “She said, ‘Come in ladies, I’m Amy.’ And it was like I had known her for years.”
Amy and the staff helped the women get settled into a third-floor studio apartment. Kathie felt immediately like it was home. It gave her a sense of hope. She says she will never forget going into the apartment for the first time.
“It was just like I got a hug from that building,” she says. “It was like that little apartment whispered to me, ‘It’s all gonna be okay. You’re safe now.’ And then sure enough, Brian’s insurance got involved, and we got a card for room and board and transportation. And then it snowballed from there.”
Annette Humberson met Kathie for the first time in the freezing cold at a shuttle stop in front the Transplant House, the social worker’s “second office,” as the staff teases. (Annette can see the shuttle stop from her desk). Kathie was a new guest, far away from St. Louis and her family and friends, isolated by COVID-19 and still getting settled into her new routine. Annette ventured outside to say hello.
The pair bonded immediately, as they waited in the cold for Kathie’s ride to the Cleveland Clinic.
In the weeks that follow they would talk many more hours in all types of settings – at the shuttle stop, on walks, in hallways, at Coffee With Caregivers over Linda’s delicious banana cake, and in Annette’s “indoor office.” (Yes, she keeps office hours).
Annette’s cornbread isn’t bad either, Kathie says.
Kathie says the help she got from Annette, including financial counseling, got her through many difficult days.
“I would have N-E-V-E-R made it without her counseling services,” Kathie says. “She just gets it. She is simply one of the easiest people to talk with. I swear, in my case, it always seemed like anytime I was about to fall apart she was there.”
Annette felt called to join the Transplant House in March 2020. She splits her time between the non-profit and work in private practice as a therapy counselor. Annette is a 25-year veteran medical social worker – the last 15 spent as a transplant social worker at the Cleveland Clinic. She was the first person at the Transplant House to hold this position.
She knows science. She knows people. And she has traveled the organ transplant road with hundreds, perhaps thousands, of patients and caregivers alike. She’s been through blood clots, ascites, dialysis, cystic fibrosis, heart failure and more. Patients and caregivers say she knows the importance of financial hardships, MELD scores, what it means to be “listed” or made “inactive,” the hope and disappointment of “dry runs,” and the endless tests, appointments, and waiting.
“This journey is scary and uncertain and has crazy twists and turns,” Annette says. “And it could be that they don’t want to talk about anything medical right then, that they just want to talk about the people in their lives.”
“It isn’t that I always have an answer,” she adds, “but it’s just about being allowed to talk. I know that.”
Brian Holmes received a double-lung transplant at the Cleveland Clinic on April 6, 2021.
Brian, 56, is friendly but not overly talkative. He’s clearly a straight-shooter, not prone to exaggeration or hype. His voice is smooth and steady, much like the husband he’s been for 34 years. For his time overall in Cleveland, he has nothing but good memories of how he was treated, as a patient and a person.
Among other things, he remembers how one nurse, with his doctor’s permission, took him on an excursion to the Cleveland Clinic’s rooftop deck, where you can see the entire city and much of Lake Erie. “Yeah, it was pretty cool,” he says. “It was a good day.”
And he remembers how his Q5 nurses, about a dozen of them, came to see him in the ICU after he woke up from the transplant. The kindness astounded him, he says. And in his final weeks in Cleveland, while he was with Kathie at the Transplant House, three people from his rehab team came by to see him, just to say hello and visit.
“They were the nicest people I’ve ever met,” he says. “They gave it 100 percent. They never gave up.”
His fondness for the Transplant House is equally as great. “They are very good people,” he says, offering his new friends his highest praise. “They are real people.”
Today, Brian and Kathie are looking toward the future and spending time with their children and grandchildren. They will return to Cleveland for follow-up medical visits.
Like most transplant recipients, Brian expresses concern that he is not progressing fast enough. (This after a weekend of camping, or “glamping” as Kathie says, because they usually go in the family’s three nicely equipped RVs). And he thinks about the other deserving patients who have been waiting so long for lung transplants, nearly all much longer than him.
Kathie clearly considers each day a gift. She can rattle off the name of every Transplant House staff member and volunteer with barely a breath in between. Each name has a memory, a kindness, attached.
“I don’t—It’s just that everybody,” Kathie pauses, for a moment unable to speak. “God really put a lot of good people in our lives, to help us, guide us, and I’m super grateful for that.”
Says Kathie, “I would have been so very lost without the team at the Transplant House. What they do, day after day, is simply amazing. Being able to offer a roof over someone’s head is great, but feeding their soul and nourishing their spirit is a whole other level of caring.”