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Angela, Jayden and Heather's story

Imagine being a teacher, standing at the bottom of a flight of stairs feeling so exhausted and unwell, you’re wondering how you’ll ever manage to make it up to your second-floor classroom, let alone stand on your feet teaching all day.

Now imagine you’re a 12-year-old boy, watching all of your friends grow faster and taller by the day, as you struggle with a lack of appetite and energy.

While such experiences are common for the tens of thousands of people around the world waiting for a kidney transplant, in this case, they aren’t just hypotheticals.

In 2022, they represented the daily reality for Angela Orchard, a 38-year-old teacher from Phoenix, Arizona, and Jayden Li, now a 14-year-old freshman from New York, both of whom found themselves in declining health and on the hunt for a new kidney.

With the average wait for a kidney lasting three to five years, neither thought they would be lucky enough to receive their second chance at a healthier life in less than two years – let alone from the same selfless person.

Before his transplant, Jayden’s kidney disease often left him tired on and off the court.

Three years ago, that wasn’t on Heather Manion’s radar, either.

 

A former thoracic transplant coordinator and ICU nurse, Heather was intimately familiar with the world of lung and heart transplants when she began her second career as a medical science liaison for the Transplant Diagnostics business of Thermo Fisher Scientific in 2021. Keenly aware of the lifesaving nature of transplant, she had long ago registered to be an organ donor after death.

 

But it wasn’t until she joined Thermo Fisher and began to learn more about the realities of kidney transplant that she began to seriously consider becoming a living donor. 

Quotation marks
“When I started learning a little bit more about kidney transplant and about the fact that people die every day waiting for a transplant, it started resonating with me the fact that I can give a gift to somebody.”
Heather Manion
Medical science liaison, transplant diagnostics
Thermo Fisher Scientific

Heather said she had thought about donating her kidney when first her mom’s friend and then her coworker’s husband needed one. “I’d always ask their blood type, but it was never AB so I said I couldn’t,” she recalls. She thought her rare blood type would hinder her from being able to donate, since only about 1 in 500 Americans have AB blood.

 

That was until Heather ran into a transplant lab director at a conference, who shared her own experience of signing up to do a non-directed kidney donation. While Heather’s blood type might not match someone she knew, surely there were hundreds if not thousands of people on the kidney transplant waitlist with AB blood, the lab director pointed out.

 

It’s little surprise this hadn’t occurred to Heather before, considering this type of “altruistic” or non-directed donation, like Heather’s blood type, is one of the rarest forms—comprising less than 10% of all living donations each year.1

 

After that fateful conversation, Heather started researching kidney transplant programs in earnest and ultimately put in a request at one of the top transplant centers in Phoenix, Arizona. She soon received a call from a Living Donor Advocate and quickly learned the process of becoming a living donor is quite rigorous—involving conversations with several health care professionals and a social worker, as well as a multitude of tests and evaluations.

 

As Heather was aware, blood type is one factor that goes into matching donors with patients in need. But it’s not the only one by far. Other key factors include human leukocyte antigen (HLA) tissue typing and antibody screening, using tests like those made by Thermo Fisher Scientific, to make sure the recipient’s immune system won’t attack the donated organ, as well as ensuring the donor and recipient have similar body and organ sizes so the donated organ will fit and function well.2

 

For living donors, the evaluation also extends beyond the physical.

 

“They asked me tough questions like, ‘What if your kidney goes into a patient and it fails?’ or ‘What if the recipient dies?’” Heather recalls. “Their job is to make sure you are mentally, emotionally, psychologically, and physically healthy enough to donate as well as 100% sure of your decision to do so.”

 

Partway through her evaluations, Heather paused the process in response to pushback she received from family and colleagues. “It made me second-guess whether I was being impulsive,” she explains. “I wanted to step back and make sure I was making the right decision.”

After further contemplation and discussions with her children, Heather ultimately decided to move forward.

 

As part of the process, she was given the choice to donate directly to someone on the transplant center’s waiting list or to go through the National Kidney Registry (NKR), an organization that works with over 100 transplant centers around the country to help facilitate paired and altruistic donations, and offers certain protections for living donors and their families, including Donor Shield and the Family Voucher Program.

“Once I learned about the NKR, I felt safer because I knew I had the protection of NKR and ‘extra points’ from UNOS that would put me higher on the waiting list if I ever needed a kidney myself. It’s dual protection,” Heather explains.

 

With the decision made to donate through the NKR, she was officially approved as a living donor on December 28, 2022.

 

The very next day, she was off to a charity event for work in California where she shared the news of her approval to become a living donor with someone who knew a family whose child needed a kidney. That child was 12-year-old Jayden Li, the boy from New York mentioned above, who had been struggling with kidney problems since age 4.

 

Heather reached out to Jayden’s mother soon after, and while she was not a match for Jayden, she offered to give him one of her Family Vouchers through the NKR, knowing that once Jayden used his, her family’s remaining vouchers would be null and void.

Back home in Arizona with her Family Voucher already committed to one kidney patient in need, Heather was “activated” as a living donor in February 2023.

Unbeknownst to anyone, the person who would receive her kidney was living just four miles away.

Angela Orchard, the 38-year-old teacher from Phoenix, began experiencing a decline in kidney function due to a genetic condition called Alport syndrome, which had previously been well controlled, after the birth of her first child, Olivia.

Over the course of a year, her glomerular filtration rate (GFR)—a measure of how well the kidneys filter blood—steadily declined, eventually causing extreme fatigue and fluid buildup around her heart.

By the end of 2021, Angela’s GFR had reached 20, at the extreme end of kidney disease and just above the level for kidney failure, and her doctor officially placed her on the transplant waiting list.

Knowing it could take years to find a donor, Angela also began preparing for dialysis, having a fistula created to be placed in her arm, all the while reaching out to family and friends who might consider getting tested to be her living donor.

Angela and her daughter Olivia

Her sister-in-law in Seattle was the first to get tested, only to find out she wasn’t eligible. Next, a friend stepped up, but her kidney wasn’t the right size. Her cousin was the next to start the process, but before the cousin even received a call back from the transplant center to begin testing, Angela received a surprise phone call. A match had been found.

 

“I was at school when they called me, and I was shocked. I was expecting to get a kidney from someone that I knew. But they said they searched the entire registry, and I was the best match [for Heather’s kidney],” recalls Angela. “This was at the end of January, and they wanted to do the surgery in early March. I had a month and a half to kind of figure everything out. It was pretty exciting, but I hung up the phone thinking ‘OK, this is really happening. We’re doing this!’”

 

In another unexpected and unknown twist of fate on March 8, 2023, Heather and Angela entered the same Phoenix hospital, soon to have more in common than just the same blood type. Heather would have surgery as the donor, while, hours later, Angela would then go through the procedure of accepting her new kidney.

When Angela awakened from the operation, she didn’t know if she would ever meet the person whose kidney she now relied on.

Donors and recipients sometimes go on not knowing each other, though their transplant center, like many institutions, allows such meetings if both parties agree.

“A few months later, I had a meeting with a social worker and there was paperwork you could fill out to give permission for your donor to contact you,” recalls Angela.

“I know a lot of people don’t—they don’t want to be judged, but I wanted to meet the person and show them what they’ve done for me.”

The same day Heather found out Angela had given permission for Heather to contact her, she sent Angela an email.

Angela is making the most of her life post-transplant

“I just said, ‘Hi, my name is Heather; I believe you have my kidney. I hope you're happy, and I hope you're healthy. And if you ever want to meet up, please feel free to reach out.’ She didn’t respond for a day or so. Then, I ended up getting a [nearly] two-page letter from her, which was just the sweetest thing, and I cried,” Heather recalls.

 

The two have since had breakfast and gotten together a couple of times. “It’s like talking to a long-time friend,” says Angela.

 

“She’s the right to my left,” says Heather. “Funny, physiologically, I was probably the perfect donor. My left kidney is the size of a man's kidney, and my right kidney was the size of a woman's kidney. So, they took my lady kidney, so everyone makes fun of the fact that I still have a man kidney,” the fashionable, self-professed “girly girl” laughs.

A year later, Heather’s generous spirit saved another life, when thanks to the voucher she had given him, Jayden received his new kidney as well.

“He was able to get a transplant before ever going on dialysis,” his mother Lisa Li excitedly explains. “Today, he has so much energy and is so much happier.”

“Before, he didn’t have much of an appetite, but now, he eats like a typical teenage boy. Getting the voucher from Heather—it’s like a miracle this happened to us.”

Since donating her kidney to Angela and her voucher to Jayden, Heather has become a fierce advocate for living donation.

And there are a few key things she wishes more people would know.

“When people reach out to me, they’ll say they want to be a living donor for a loved one who is not a match. I suggest they register at another system as well—you can register at multiple transplant centers—and if you register at another center, maybe one that’s part of the NKR, you might get a match sooner,” Heather explains. “If every patient who needs a kidney brought a living donor, we wouldn’t have a shortage.”

“As far as becoming a living donor, I think there’s a stigma—there’s old research that said living donors don’t have as long a lifespan, but that’s been proven false. It’s categorically not true,” she continues. “And it doesn’t cost you anything to donate either. That’s all paid for by the recipient’s health insurance.”

Heather and Jayden

Today, Heather, Angela and Jayden are living full, healthy lives—and Heather considers her family extended by two full units.

 

When asked how she responds to those who learn about her donation and question her decision to donate to a complete stranger, Heather says, “People are kind. And I think people would do more if they just knew. I think I would have done it earlier, had I just known.”

Say "YES" to donation!

 

You can give the gift of life to help someone like Angela or Jayden. Learn more about organ donation or visit the National Donate Life Registry.

 

This story may contain general information relating to various medical conditions or their treatment. The information in this article is provided for informational purposes only and is not meant to be a substitute for advice provided by a doctor or other qualified health care professional. You should always consult with a doctor or other health care professional for medical advice or information about diagnosis and treatment.

Citations

1. “Donor : Living Donor Relation to Recipient by Donation Year (2022 - 2023),” Organ Procurement & Transplantation Network. https://optn.transplant.hrsa.gov/data/view-data-reports/build-advanced/ [Accessed 9/13/24].

2. “Matching Donors and Recipients,” OrganDonor.gov. https://www.organdonor.gov/learn/process/matching [Accessed 9/13/24].

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