On day 20 of her stay in the cardiac intensive care unit at the University of Kansas Medical Center, Kari Alejandre posted on her Facebook page, “I’m getting a new heart today. It will be my third.”
She had been receiving family and other well-wishers in her pajamas for nearly three weeks.
“Please tell people my mom picked out these jammies,” she said at one point, looking down at the pink flamingos on a field of black.
“Mom got me 10 pairs because after bypass, going overhead with clothes is just not easy,” said Alejandre, who is 39 and lives in Kansas City, Kansas.
Recovering from bypass surgery is a long and bumpy road for anyone, but Alejandre’s has been much longer and bumpier. She’s been using someone else’s heart since she was 19.
Twenty-three years ago, on the Friday before Memorial Day, she was a sophomore at Shawnee Mission North High School. It was finals week when she abruptly lost all her color and began vomiting.
“It was the weirdest kind of sick, not like the flu or anything,” she explained.
By the end of that weekend she had been admitted to Children’s Mercy. At first, doctors thought a virus had ravaged her heart, but Alejandre suspects it was cardio myopathy. Medications worked until she went into congestive heart failure at the age of 19.
A heart transplant was all that could save her.
So, in 1998, she became heart transplant patient number 174 at St. Luke’s MidAmerica Heart Institute. Patient number one had queued up in 1985.
Since 1988, fewer than 70,000 people nationwide have undergone heart transplants, according to the United Network for Organ Sharing, compared to 432,000 kidney recipients in the same period. UNOS is a private organization that manages organs for the nation under a contract with the federal government.
After Alejandre’s bypass surgery 10 weeks ago, it was clear that her second heart was failing her. Doctors told her she could not leave the hospital until a new heart was available.
On “the list”
For most of the time that Alejandre spent waiting for her third heart, she remained upbeat; before word of the donor heart’s imminent arrival on the evening of May 24th, she had been the only person in the unit waiting for a heart.
She was classified as 1A, meaning that she was waiting in a hospital. A 1B patient waits at home. A patient classified as category 2 needs a new organ, but not desperately.
Later this year, UNOS will institute a six-tiered categorization system that will more intricately stratisfy patients’ various levels of need, said Anne Paschke, public relations manager at UNOS.
“There is not a ‘list’ until an organ becomes available,” Paschke explained. “Then there’s a match run for that particular organ. If you’re compatible, you’ll be on the list.”
Geography also plays a role in who receives an available organ, as Alejandre’s family found out. While doctors would not tell the family where the heart was coming from — not even whether it was arriving by air or land — they did know that the hospital’s policy is that an organ cannot be outside of a body for more than four hours.
“If it’s in your area and you’re one in the sickest group, you’ll be close to the top,” Paschke said. “Then there are other factors, like blood type; the identical blood types get them before compatible blood types. If you’re not compatible the first thing the system does is rule everybody off, then it matches everyone else based on these allocation policies.”
As she waited, Alejandre experienced plenty of low times. She understood that in order for her to live and return to her family, someone else must die. It was hard to fight a feeling of guilt — a process she’d already been through once before.
“Me needing that does not karmically cause a death,” she reminded herself.
Years ago, it was a 13-year-old named Keely Bjorgaard who had saved her.
A mother’s generosity
The month before Keely Bjorgaard died, Keely and her mother, Mary Ann Bjorgaard, were watching TV when a commercial about organ donations came on.
“I looked over at Keely and thought, ‘Could I do that if something dreadful would happen?’ And I remember thinking ‘I’m not even going to think of such a thing,’” Bjorgaard said.
Bjorgaard, who lives in DeSoto, Kansas, and her husband Ray had adopted two special needs children after their three biological children were grown. Though Keely had a host of medical problems, Bjorgaard said she was a delight.
Not long after seeing that commercial, an accident in the home led to Keely’s death.
“After Keely died I felt as though her purpose on this earth was to give organs to others to help them be a blessing to others,” Bjorgaard said.
It was Alejandre who received Keely’s heart 19 years ago.
No official record exists for tracking contact between donor families and recipients. According to UNOS’ regional member, the Midwest Transplant Network, both parties must independently request contact with the other party.
But the Bjorgaards, it turned out, knew the person who had received Keely’s heart. The two families had been acquainted for years, having seen each other regularly at the Shawnee Farmers’ Market, but had never discussed personal matters.
One weekend at the market, Alejandre’s stepfather and Keely’s father were having a casual conversation about their kids’ illnesses and connected the dots.
“Your daughter has my daughter’s heart,” Bjorgaard said, recounting the story recently. Ray died four years ago.
As recent weeks brought news that Keely’s heart was at its end, Bjorgaard was grieving once more.
Alejandre and Bjorgaard haven’t interacted in person for a couple of years, but are frequently in touch through email and Facebook.
“The beat of Keely’s heart is the last thing that I can feel or touch,” Bjorgaard said.
Donor and recipient emotions
“I think about Keely every day,” Alejandre said. “One of the beautiful things between her mom and me is that she’s able to rejoice with me and I’m able to grieve with her.”
Alejandre said she really wanted to be the person who made a donated heart last 60 years, though the average is closer to 15.
She’d already beaten some big odds. When she married Adolfo Alejandre in 2013, he already had a daughter, Bella, who is now 13. Then, six and a half years ago, the couple had a child, something Kari’s cardiologists told her not to do because of the unknowns involved.
“I think I looked at being pregnant through a different lens,” she said. “When you’re told you can’t, it’s just a pain to bear.”
She’s one of only a handful of heart transplant recipients in the world who’s successfully carried a pregnancy to term. An international organization called the Transplant Pregnancy Registry shows that in the 25 years it has kept data, only 101 live births had been recorded as of 2016.
Though living with a transplanted heart has not been easy, she said, she’s grateful for the 20 years she’s had.
“It’s a lifetime because I was 19. I’ve had this heart longer than my own,” she said. “That’s two lifetimes.”
On Sunday, Alejandre’s condition was still delicate. Family members told KCUR she remained unconscious in the intensive care unit, and doctors expected to ease her awake on Memorial Day.
Follow KCUR contributor Anne Kniggendorf on Twitter, @annekniggendorf.
