MACUNGIE, Pa. — When Caroline Laubach goes to sleep, she said, she's transported back in time two years.
She's reacquainted with her 18-year-old self: The Caroline Laubach before a heart transplant.
The one who could walk before suffering a spinal stroke that left her paralyzed from the waist down.
"It sucks when you wake up and you're like, 'Oh, can I move my legs? No. All right,'" Laubach said, rolling her eyes with a smile.
"And, I don't know, sometimes it sucks. But most of the time, it's kind of like a window into my past self being like, 'Hey, girl, I'm still here.'"
"I would not be here today if it wasn't for a heart transplant. It was a very dire situation."Caroline Laubach
Laubach has hit milestones many face later in life: After a heart transplant at just 18-years-old, she also beat cancer — twice.
April is National Donate Life Month, and Laubach said, "I would not be here today if it wasn't for a heart transplant. It was a very dire situation."
So, she said, she finds herself thankful each March — the anniversary of her transplant — and April, but also reminiscing of her "old" life.
If she were to write a story about her life thus far, the Macungie resident said she would call it, "Seeing Life for a Second Time."
'Need to be making plans'
Laubach's story begins in January 2022, when, she said, she started having breathing problems.
All tests came back negative for viruses, and an urgent care misdiagnosed her with walking pneumonia.
"Every time I would fall asleep, I would feel like I would stop breathing," she said. "So I was actually sleeping in bed with my mom, being like, 'Can you watch me fall asleep, please, because I don't think I'm breathing.'"
Then blood tests from the emergency room at Lehigh Valley Hospital — Cedar Crest showed she was in liver, kidney and heart failure.
The hospital implanted an Impella heart pump. But Laubach said medical professionals advised her family to choose a hospital better equipped to treat her.
They chose the Hospital of the University of Pennsylvania. Within 24 hours, she was admitted.
"I was supposed to take the helicopter and I'm so mad I didn't get to," she said. "It was too stormy."
She got to the Philadelphia-based hospital by ambulance instead.
From that point on, her best friend, Cassie Yard, said, "everything just escalated really fast."
"So that was kind of when they told my family, 'If we don't get a donor heart, this is when we need to be making plans.'"Caroline Laubach
Penn Medicine doctors diagnosed Laubach's condition as left ventricular non-compaction, a "very rare" congenital cardiomyopathy, a disease of the heart muscle, according to the National Institutes of Health.
Then, three days before her heart transplant, on March 18, Laubach began displaying symptoms of being paralyzed — tingling in her legs and being unable to move her toes or feel pressure on her legs.
Laubach said she was connected to an extracorporeal membrane oxygenation, or ECMO, machine, which pumps blood from the body to a heart-lung machine that removes carbon dioxide and sends back oxygen-filled blood.
But a tube attached to the machine connected to her groin area restricted blood flow to her spine, causing her to have a spinal stroke, she said.
"So I think maybe one or two days after the 18th, they wound up putting ECMO directly into my chest — which you can't really live like that for a long amount of time," Laubach said.
"So that was kind of when they told my family, 'If we don't get a donor heart, this is when we need to be making plans.'"
Third time a charm
Three days later, Laubach received her "new" heart.
She said doctors passed up two hearts — the first one "didn't look quite right" and another came after she showed symptoms of being paralyzed, but doctors didn't want to risk potential complications.
Her third match, the one she finally got, came from a 40-year-old woman with healthy habits, less than 24 hours after going back on the transplant list.
Laubach said she considers herself "very lucky" for two reasons: timing, and the fact that transplant patients often don't find out if they can actually get the organ until they're opened up on the operating table.
Dr. Monique Tanna, director of ambulatory heart failure at the Hospital of the University of Pennsylvania, said Laubach's condition moved her up on the list.
"She was essentially dependent on life-saving mechanical support," Tanna said.
Donor recipients can write thank you letters to family members of donors, which Laubach hopes to do this year.
"It's hard to, because it's such a joyous thing for my family, but you have to remember that you're writing to somebody who was actively grieving their family," Laubach said.
"It's a little bit difficult to navigate, but I think it's really important to do."
Laubach said she had to both celebrate her new heart and simultaneously grieve her former able-bodied life, but found comfort in putting good use to her donor's heart.
"I don't think I accepted [the heart] for my own life," she said. "For a while it was hard.
"But coming out of rehab, I remember my sister drove me home from rehab and my mom drove my wheelchair and everything else home in her car.
"And I remember just leaving Philly and looking around and everything just seemed so green... It was very surreal. I think that's when it hit me too that I had actually survived."
The next chapter
Laubach said she came home from rehab in June 2022. Two months later, she began having night sweats, nausea, low-grade fevers, GI symptoms and a strange-looking tonsil.
A biopsy showed she had cancer — a rare type of lymphoma, called transplant lymphoproliferative disorder.
Since the cancer attacked only one lymphatic system, Laubach could treat it by taking an autoimmune drug called Rituxan instead of chemotherapy.
By December 2022, "they thought that pretty much all of it was in remission," Laubach said.
But gastro-intestinal symptoms started up again just two months later accompanied by abdominal pain, she said.
This time, Laubach had cancer growing around her small intestine and attached to her colon.
"I think when you're in a situation like that, there's only one way to go about it, and you just have to go through it."Caroline Laubach
Although the surgery was difficult, the cancer was removed after a five-hour operation, she said.
In less than a year, Laubach had gone through two life-changing events.
She became one of the 25.9% of wait-listed patients at the Hospital of the University of Pennsylvania to get a donor heart within the first 30 days of joining the list and part of the estimated 2-20% of transplant patients to get post-transplant lymphoma.
And she survived it.
"I think there were a lot of days where I was just, like, 'Why am I even still doing this?'" she said. "You know, there's got to be some reason, but I just don't know.
"I think when you're in a situation like that, there's only one way to go about it, and you just have to go through it. So I think that's kind of how I kept it in my mind."
It's inspiring to friends, family, followers and her own doctors.
"It really is an incredible thing," said Tanna, the University of Pennsylvania doctor. "I asked myself that question all the time, too, because, being 20 years old, and going through so much, sounds — and it is — a lot.
"But I can think of two other patients right off the top of my head — and there are many more — and I think it's really a reflection of their positive attitude, their perspective, and also their realization, which is true, that they're grateful to be alive."
Just Roll With It
Laubach has adapted to such a drastic change in her life. That change is likely to be permanent, she said.
Prior to her diagnosis and treatment, she studied secondary education at Millersville University. She dropped out after having to foot a nearly $13,000 bill once she missed the no-penalty deadline for her medical leave by two days.
Inspired by the medical staff involved in her own success story, she's now taking general education courses at Lehigh Carbon Community College, hoping to study social work or occupational therapy.
"When you go through all of this, you want to help people in ways that maybe you haven't been, and you want to continue all of that help," Laubach said.
With her bloodwork improving, she's been able to do more — such as a day trip to the beach to celebrate her two-year transplant anniversary and Disney World vacation she planned with her sister long before her hospital stay.
Laubach said visiting Disney World — somewhere to which she traveled numerous times in her childhood — now that she's paraplegic, placed a new lens on her view of the world.
"I think I was definitely, like, 'Oh my God, I finally feel like something is made for me, like with me in mind," she said.
"Organ donors 100 percent go to real people."Caroline Laubach
"I remember rolling into the park and being like, 'Oh my God, this literally feels completely different than it used to, because you're at a different perspective with everything."
Laubach said that being paraplegic means that everything takes 15 minutes more than it typically would, effectively removing any spontaneity from life.
Previously minute details, such as finding accessible bathrooms, now require planning.
So she's taken to Instagram to document her new chapter of life, under the name just_rollwith.it.
'It's definitely a myth'
Laubach said she sees it as a way to raise awareness for younger paraplegics and donor donation and a means of "getting back out there."
"Organ donors 100 percent go to real people," Laubach said.
That concept hit close to home for Yard, her best friend. She said a mutual friend from high school who passed away was an organ donor, and now, she's seen it save her best friend's life.
"No one even asks or knows if the person is an organ donor. It's only after a person is pronounced and has passed away, or they're actively dying at the time."
"It was really, really surreal to see both sides of that," Yard said. "To be so grateful that you had a friend receive this life-saving donation, and then you also have a friend who's going to be giving that gift to others."
And Laubach said she hopes her story helps people understand that — that organ donation isn't an opportunity for doctors to harvest needed organs, but a chance to aid those in need.
Laubach said "it hurts" seeing rumors online that organ donors get sub-optimal treatment after witnessing so many nurses and doctors tirelessly care for her.
It's far from the truth, Tanna said.
"It's definitely a myth," Tanna said. "I mean, the consideration for organ donation does not even come up until a patient has died...
"No one even asks or knows if the person is an organ donor. It's only after a person is pronounced and has passed away, or they're actively dying at the time."
Looking ahead
Continuously adapting to life two years post-transplant, Laubach looks forward to experiencing all that life can offer her.
Right now, she busies herself with painting rocks for the Lehigh Valley Rocks group, hoping to raise awareness for organ donation and the transplant community.
She'll also participate in the 27th Annual Gift of Life Donor Dash Philadelphia with her family this month — for which she already beat her $300 fundraising goal.
She said she hopes she can get a tattoo or two, with approval by her doctor.
Laubach said she knows her first post-hospital tattoo would be two bells tied together with a ribbon, to resemble the bells she rang when she got her transplant and when she beat cancer.
"It's definitely made me mentally stronger. It's also given me motivation to do certain things like maybe write a book, whereas before I don't think I would have been as set on that."Caroline Laubach
She plans to write a children's book with her sister, Meredith, about organ donation.
She even dreams of modeling for Aerie, an inclusive fashion brand, one day.
The experience has offered a dual perspective on life to Laubach: Sometimes she feels set back, but being given a second chance at life, there's still so much she can do.
"I think that it's a lot to deal with in two years, so in that way, I almost think that I'll be able to deal with whatever comes my way now," she said.
"It's definitely made me mentally stronger. It's also given me motivation to do certain things like maybe write a book, whereas before I don't think I would have been as set on that."
