Written by Zoe Engels, Contributing Writer and Editor
What’s it like to go through the process of donating a kidney to a complete stranger? Donor Brooke Iarkowski tells us what inspired her to become a non-directed kidney donor, meaning she donated a kidney to an unspecified, medically compatible recipient, and what this life-saving journey has meant to her.
When Brooke was a child, her mom was diagnosed with Polycystic Kidney Disease, which causes fluid-filled sacs to grow on the kidneys and can lead to kidney failure by limiting their ability to filter waste from the blood.
The disease progressed and “reared its ugly head,” as Brooke told SODA via email, when she was in high school. So, Brooke started hosting fundraisers and trying to educate her classmates about kidney disease.
By her first year of college, Brooke’s mom had been placed on the waitlist for a kidney transplant.
Did you know that there are currently an estimated 106,000 people on the national transplant waiting list, according to the American Kidney Fund? Eighty-seven percent of those individuals—that’s 92,000 people—are waiting for a kidney transplant. On average, most people on the list wait three to five years for a kidney. SODA and organ, eye, and tissue donation advocates like Brooke are working to decrease the waitlist by educating and registering more people as donors.
Luckily, Brooke’s dad was a match, and he donated one of his kidneys to his wife, Brooke’s mom, on January 27, 2009.
“That moment changed my entire career path,” Brooke, who now works for the American Society of Transplantation (AST) as an advocate for better recipient care, told SODA.
In college, she interned at a tissue bank and then spent several years working at an Organ Procurement Organization (OPO), where she educated students about organ, eye, and tissue donation and transplantation. She also worked with grieving families at the time of their loss to guide them through the donation journey.
“My time at the OPO was one of the most emotionally difficult jobs I will ever have, but it was also one of the most rewarding,” Brooke said. “I have families I am still in touch with, colleagues I call family, and the understanding that talking about death and dying doesn’t need to be scary. In fact, it is vital we talk about our wishes regarding organ donation before we are in that situation.”
As Brooke witnessed her parents’ experience with kidney donation and transplantation, she knew that one day, if she could, she wanted to be able to provide the gift of life through kidney donation.
Due to the history of kidney disease in her family, Brooke first needed to ensure she would be healthy enough to donate a kidney. Fortunately, she was!
Additionally, her company, AST, offered 12 weeks of fully paid leave for organ donors through the Living Donor Circle of Excellence, which is a big deal and not often the case. Brooke and her husband have two little girls, so taking unpaid time off would have been a financial detriment to the family that would have prevented her from turning her dream一giving the gift of life to someone in need一into a reality.
SODA is also a proud member of the Living Donor Circle of Excellence! Learn more about this program, which is eliminating barriers to living donation, on AST’s website.
In early June 2023, Brooke approached her husband about becoming a non-directed kidney donor. (Though he knew she always wanted to take this on, she needed to make sure they were on the same page, as it would be a big undertaking for their whole family.)
“My husband was so, so supportive,” she said. “We are high school sweethearts, so he has been a part of all of this [journey]. He was on board right away, but that doesn’t mean he wasn’t nervous. At the end of the day it’s a surgery, and it can be scary for the donor and for their loved ones, but he never wavered on his support and love.”
She added, “I think it was a shock to our extended family and friends. There were concerns for my health, my family’s health, my children, but at the end of the day it all comes from a good place, a place of love, care, and concern… and sometimes just a lack of knowledge and understanding. My personal and professional experiences [showed] me the life of someone with kidney disease and how much it can be positively changed when they receive a transplant, so I knew I wanted to educate along the way, which is what I tried to do during every step.”
With her husband’s support, Brooke filled out the form to become a living kidney donor via her elected facility, Penn Medicine. Her daughters were four and two years old at the time, so they worked to speak with them often about donation and what it all means, explaining things, answering questions, and reading books.
“They didn’t understand everything obviously, but they knew that mommy was going to help someone, and for me, that was enough of a reason [to donate],” she said.
After several phone calls and interviews, some bloodwork, and an 8-hour testing day in August to confirm she would be physically, mentally, and emotionally healthy enough to donate, Brooke’s surgery was scheduled for October 24, 2023.
She emphasized, “It’s really important to remember that your transplant team is there for YOU (the donor), their job is to make sure you are okay, you are healthy, and that you won’t be impacted after donation—to the best of their ability.”
Brooke said she was never nervous for herself during the process leading up to the surgery, let alone going into the surgery. Instead, she was nervous for her recipient.
“I knew that getting a transplant doesn’t just mean everything is rainbows and butterflies,” she said. “It’s … challenging, and it will be for the rest of their life. Transplant is an amazing thing, but it is also a life-long thing, and it’s extremely mentally and physically taxing.”
Her first questions upon waking up from surgery were: How did the kidney look? Was it successfully en route to the recipient?
Did you know that non-directed kidney donations often do not stay local? For example, Brooke donated her kidney out of Philadelphia, but it went to a recipient in North Carolina.
“I just wanted to know [the kidney] arrived safely into its new home,” Brooke shared. “So, when my surgeon told me he got word that the kidney was transplanted successfully and everything went well for the recipient, I just cried tears of relief.”
While many non-directed kidney donors never meet their recipient or learn who their recipient is, that’s not always the case. Brooke decided to write to her recipient within days of coming home from the surgery just to let him know a little about her and wish him well—knowing he didn’t need to write back if he didn’t want to.
But Brooke heard back from Antonio the next day.
“I again just cried and cried the happiest tears,” she said. “I obviously knew someone was receiving the kidney, but to hear from him, to learn about him, to know that he was recovering as best he could, just really made everything so real. We keep in touch, talk about happy things and hard things. I’ll never forget when he FaceTimed me on Thanksgiving that year, and I got to meet members of his family. Such a surreal and special thing.”
Overall, Brooke had a smooth recovery. The most challenging part, she said, was not being able to pick up her little girls for six to eight weeks—another example of how it takes a village to be a donor and why donation shouldn’t be taken lightly.
She encourages students to continue advocating for and educating about organ, eye, and tissue donation.
“Education is essential when it comes to understanding organ, eye, and tissue donation,” she said. “It’s an intimidating topic, one we associate with death, which most people don’t want to talk about. But the reality is that this conversation is about life, and the gift we can leave. When you get your driver's license. they will ask if you want to register as an organ donor and it's important to understand what that entails. What is the ripple effect of saying ‘yes?’ It’s cliché. but, knowledge is power. There are so many myths and misconceptions about organ donation and understanding the truth can literally save people's lives."
Her advice to students?
“Get involved anywhere and everywhere!” she said. “... There are so many wonderful organizations and people who want to help advocate, you really just need to ask.”
To learn more about how you can get involved as an advocate in your community, check out sodanational.org/students and see if there is already a SODA chapter on your campus.
Comments