Giving a Kidney Was Good for My Heart

Giving a Kidney Was Good for My Heart

About four years ago, I donated my kidney to someone I didn’t know. Today I work in the transplant field for a living, so being a donor comes up a lot. It’s basically the first thing most people find out about me.

Which I really hate, to be honest: I don’t like seeming different, like people assume I’m some sort of saint. That’s not how I see myself. It’s not how I want others to see me.

On top of that, every time someone asks me why I donated (which is always), I never really know what to say.

It’s not that I lack for explanations. I’ve dissected my decision to death. The explanations I give tend towards the clinical—causal factors explicating my aberrant behavior. I’d had anesthesia before; I overemphasize abstract reasoning and principles; I went to Catholic school; I have a savior complex, etc.

That doesn’t include the jokes I tell because explaining makes me nervous: “I was a corporate lawyer and wanted the time off.”

But that just list traits like I’m talking about someone other than myself. Mix that with the humor, and it’s just a way to pretend I’m in the same spot as my interrogator: “I know it’s weird too.”

That hides the way I really feel about it, hides my earnestness. I gave because if I didn’t someone would die. None of my other reasons matter.

It didn’t need to be my responsibility. No one’s ever obligated to be a kidney donor, to anyone, for any reason. I chose to take that on myself.

For most donors, giving a kidney fulfills a need closer to home – saving the life of someone they care about. But there too, I think an essential step is to assume a responsibility that you have every right to walk away from—choosing to voluntarily burden yourself with the needs of another; choosing to answer that need by sacrificing of your own body.

We live in a transactional culture where we’re told always to put yourself first. Don’t take on burdens that aren’t yours. No one’s entitled to your help. Look out for number one.

That makes discussions about giving an organ really difficult. It feels like people often take living donation as an indictment of their own choices—if you don’t know whether you’d give a piece of yourself to save a friend’s life, does that make you a bad person?

Of course not. No one needs to take on obligations that aren’t theirs. But, for me, the choice to accept responsibility enlarged my own life, made it richer with purpose. Becoming a kidney donor was the best decision I ever made. It made me happier than anything else I’ve done in my life.

I’d wanted to donate for years. When I finally did, it felt like running my first half-marathon or graduating from law school. It was an achievement I’d deliberately planned and had to work to make happen, like summiting my personal Mt. Everest. I had gotten the chance to live out the best version of myself.

For many people, donation only deepens their sense of self—confirms the potential they knew they had all along. Many see it in practical terms: when someone I cared about was in need, I merely answered the call. They go back to their lives feeling joyous but largely unchanged.

That’s not what it was like for me. The experience turned out to be addictive. I had been working in a job that meant nothing to me besides the paycheck. Suddenly I felt drawn to a higher calling, though I didn’t yet know that meant working to end the transplant shortage. When I donated, I had set my mind and accomplished something profound. Now that I knew I had that power, I couldn’t just go back to the compromises I’d been making.

The road to where I’ve ended up was a long one. I tried to be a writer and failed at it. I left my home and the woman I lived with to start a new career in Toledo, Ohio. (I didn’t know anyone within two hundred miles). I received a grant, came back to the east coast, and started Waitlist Zero.

Ending the kidney shortage is my life. It wasn’t when I donated, but the same feelings that made me a donor then make me want to find everyone a donor now. The same things that make me uncomfortable telling my story as a donor keep me from speaking on my passion for Waitlist Zero.

Waitlist Zero means finding a transplant for everyone who needs one. It means that access to medical care shouldn’t be contingent on your skin color or your health insurance or how many friends you happen to have or how healthy they happen to be. It means that no one should ever have to feel the loneliness of wondering if anyone cares about you enough to save your life. It means tens of thousands of families each year shouldn’t have to go to someone’s funeral and wonder if they could have done more.

I wish I could say that this passion for ending the shortage was broadly shared but it’s not—for the simple reason that most people in the field don’t believe it’s even possible. Doctors are passionate about caring for their patients—incredibly passionate. But for decades the shortage has been growing and growing and the number of transplants has just stayed the same.

It gets tiring to hit your head against the same wall; after a while you forget that anything better exists. It’s hard to expect faith in the possibility for change.

But I do have that faith. It’s what sustains me through the travails of starting a new business and feeling sometimes like I’m making every possible mistake along the way. And I could give a dozen reasons why ending the shortage is possible: how living donation saves the government hundreds of thousands of dollars per patient; how studies show educating patients and their families can nearly double the rate of living donation; how if only one in ten thousand Americans donated each year, there’d no longer be a shortage.

Right now, six in seven people who need a transplant can’t find a living donor—I refuse to accept that six in seven Americans don’t have someone able and willing to save their life if only our community did a better job of supporting donation.

Yet those are just rational reasons. Ending the shortage is a transformational change: something more is needed than mere logical deduction. Otherwise it would have happened already.

What drives me to keep going is less rational certainty than the conviction that the field needs at least one person who believes the shortage can be defeated—the hundred thousand patients on the waiting list deserve champions who refuse to accept their deaths as inevitable. And we deserve a community where people take responsibility when they don’t strictly have to, a community that supports transplant and never lets die somebody who only needs a willing donor to live.


Living Donor Portrait: Sedicah Powell

Living Donor Portrait: Sedicah Powell

Sedicah Powell is a mental health professional from New York. In 2014, life was intense. Good intense. She was working full-time and she’d just started graduate school at Fordham University to attain her master’s degree in Social Work. Then the news came. Her mom, who had been diagnosed with glomerulonephritis when Sedicah was in grade school, learned that her kidneys were now functioning at about ten percent of normal. She would need dialysis or a transplant right away. “When we got the news, it was a big crash in the family,” said Sedicah.

Coming together, her family decided that collectively they’d all be tested. Sedicah, along with her sister, grandmother, and aunt were all tested. “I’m African-American and many aspects of our health are not so great,” said Sedicah, referring to the fact that many African-Americans aren’t eligible to donate a kidney because of higher rates of obesity, high blood pressure, and diabetes compared to other groups. “Because of these things, many of my family members were screened out. A few of us moved forward, but none of us were a match. This was another big shock.” she added.

Sedicah’s mom, Pauline would be a difficult match. She had a less common blood type, but tests also showed that she was sensitized, meaning her blood showed the presence of antibodies that would have reacted against a new kidney, causing a rejection. She would need a perfect match – someone with a compatible blood type but also naturally immune to Pauline’s antibodies.

The transplant team looked to plan B. Pauline’s results were listed in a paired exchange national database in the hopes of finding that perfect match. It was a numbers game. Months went by and no match. “We prayed about it. Prayer works. We prayed and prayed. We didn’t give up. We knew it was going to get better.”

Finally, a mother and son pair from the Bronx, and in the same situation provided an opening. Sedicah would donate her kidney to the other mom. The woman’s son, in turn would donate his kidney to Sedicah’s mom Pauline. The family’s prayers had been answered.

There was a solution at hand, but a new struggle had now begun. “Juggling all the other stuff was the hard part,” recalls Sedicah. “I had grad school classes to attend, papers to write, and full-time work.” Based on advice from her nurse coordinator at the transplant center, she planned to take one month off of work and school to recover, but how to make ends meet? She spoke with her boss who helped her make a plan. She’d use a week of accrued sick time and applied for a medical leave which allowed her to get short-term disability while she recovered. “The short-term disability helped, but it wasn’t the same as the normal paycheck,” said Sedicah.

After surgery, Sedicah described her recovery as short and painful. “I’m very self-reliant, but during recovery, I had to rely on others – even to get out of bed.” She was out of the hospital in 2 days and back to driving and school in 2 weeks. Because of the lifting constraints and active labor she performs at work, sometimes for 16 hours a day, Sedicah waited 2 months to return to work. But when she did, she knew she was ready.

Despite the hardships, Sedicah considers it to be a great experience. “I get chocked up every time I think about it,” she said. “The satisfying part goes without saying – not seeing my Mom suffer like she was. When I went into her [hospital] room, I was in pain, but she had this look on her face that I hadn’t seen for such a long time. She was smiling and her face was bright. I took part in something that saved my Mom’s life, plus helped save someone else who was sick. It completely changed two lives.”

Sedicah continues to give back by speaking in the community about donor awareness, participated in the 2015 NYC Kidney walk, and was given the “Gift of Life” plaque from New York State for her brave act. “When I speak to others, I always include the facts about African-Americans, and tell people ‘mind your health’! I never thought I’d donate a kidney at age 24. Healthy people of color should consider helping someone else in need.”