Teresa's Story

My husband and I spent three years searching for a kidney for our son, Ryan. My blood type is A, my husband is AB, and Ryan is a B. So, we were ruled out very early in the process.

One day while I was wandering the aisles at Hobby Lobby, I got the call that I wasn't a match. It was like in the movies, when someone gets bad news, and they fall to their knees. It really happens like that. I was in the wrapping paper aisle at the time.

Finding out your child has a chronic disease is really, really hard; finding out you can't be the one to make them better; I don't think I've ever felt so helpless in my life.

But somewhere inside my head, I heard our pediatric nephrologist Dr. Amy Kogon saying, "This isn't the end to anything."

The Diagnosis

I sat in a blue, stiff chair with metal armrests in small, bright yellow exam room directly across from a doctor I had just met.

Ryan was a few feet away from me, also sitting in one of the blue, stiff chairs but turned sideways, criss- cross applesauce, staring up at Paw Patrol playing loudly on the flat screen TV mounted high on the wall.

Pediatric nephrologist Dr. Amy Krogon focused on the computer screen in front of her, reviewing the results of all of the tests Ryan had gotten since the very urgent call from his pediatrician only a few days earlier. It was a perfect fall Thursday when we got that call. Not too hot, hints of orange and yellow speckling the leaves on the mostly still green leaves. School was in session just a few weeks, and I had put a very happy and healthy boy on the bus that morning before driving to Philly to set up an art show.

There was a problem with Ryan's routine labs. She thinks it's his kidneys and we need to bring him in as soon as possible.

As I hung up the phone, I immediately hopped on Route 76 for the most excruciating drive of my life. I called my husband to meet me at home, and together we went to pick up Ryan from school and rush him to his pediatrician's office where they would recheck his labs, check him for internal bleeding, and run more urine tests.

How do you prepare your seven-year-old for these tests? All I felt sure of was wanting to scoop him up into my arms and wrap myself around him with all of my might.

Now several days later with no glaring indication that anything was wrong with Ryan other than labs, I was convinced Dr. Kogon would look up from her computer and tell me that Ryan was fine and it was all a huge mistake.

But, that is not how it went.

I can't recall exactly how it went, because once Ryan's doctor started speaking and I heard her say "Ryan has Chronic Kidney Disease. . ." the entire ocean rushed into my ears and I was deep underwater. CKD? I panicked.

Mind, racing.
Face, on fire.
Chest, tight.
Breath, none.

Ryan, still watching Paw Patrol.

Time, slowed.

And then, a statement that pierced through the thick haze of my racing thoughts, I heard Dr. Kogon say: "This isn't the end to anything."

And I resurfaced. "This isn't the end to anything."

Breathe.
Ok. We can handle this.
Breathe.

The Shift

After the diagnosis and my husband and I found out we weren't a match for Ryan, we really got to work.

We became experts on kidney donation. We told friends and family; we shared our story with anyone who would listen.

So many came forward and got tested. None were matched. There is no possible way to articulate the love and gratitude we have for those who offered to help Ryan. There was so much waiting and so much unknown. As a person who finds themselves needing to know all the details, the next steps, and the possible outcomes ahead of time, I found myself paralyzed in a state of "wait and see."

A week after his diagnosis and still grieving it, Ryan and I were leaving the lab for another blood draw and headed to the ophthalmologist to check if his eyes has been impacted by his CKD. Wavering between numbness and sadness, I get in the car and, as I buckled my seatbelt, I hear Ryan break out in laughter in the backseat.

I looked up at him in the rear view mirror to meet his eyes and asked him what was so funny.

Giggling, he told me he knew why his kidneys weren't working: "Mom, it's because they were too busy playing together to do their jobs." My icy numbness cracked wide open.

Ryan was ok.
We were going to be ok.
This was not the end to anything.

The Call

It took three years.

So many people went through the testing process, including myself for a possible kidney paired donation exchange once the National Kidney Registry was up and running.

We got the call in mid-December. I would be donating to someone in Washington, D.C., and Ryan would be getting a kidney from someone in Tennessee.

We were in complete shock -- disbelief.

And here's the thing no one tells you. You think that this is going to be the happiest news. We had been taking it one day at a time, waiting for so long for this day. This was the day. All that waiting and wishing has finally come to an end and you have your next step.

Everyone we told was so happy, and I wanted to be happy, but I couldn't shake the heaviness and fear that this news bore. Inside, I was terrified and completely overwhelmed.

My son – my baby – was about to undergo a major surgery, and I wouldn't be able to be there when he woke up to help him through the scary and painful parts because I would be recovering myself from my own procedure. Although I had been there every day this entire time, I couldn't be there for this milestone.

And then there is my oldest son, Owen. Owen had to withdraw from a holiday performance he had been rehearsing for months to protect Ryan and I from any COVID-19 exposure pre-surgery. The healthy siblings get the short end. They go through the same pain and sacrifice that we do as parents but have far less capacity to deal with their feelings.

I had yet to process my own fears surrounding my procedure; all of the "what ifs": writing down passwords, organizing finances, making sure wishes are known, organizing, and the like.

I felt like I was falling apart, and that felt so wrong because Ryan was finally getting his kidney.

"This isn't the end to anything."

The Outcomes

Both Ryan and my surgeries were best-case scenarios. In fact, I woke up in recovery and in no time at all started taking post-op selfies and send them out to a lot of people (they might consider implementing a "no phone" rule in recovery)!

I healed quickly. I and was so surprised that the days after donating I physically felt almost the same as I did before donating (other than being very, very bloated). Almost like child birth, there really is no way to accurately describe what that bloat really feels like.

Day by day I got better and stronger. I took long walks every day, which gave me a lot of time to think. I no longer had to think about how to solve Ryan's kidney crisis, so I found myself thinking about what life would now be like for Ryan now. What might a kid who never really knew what it felt like to be in a body that worked as it should experience in a body that was?

A few months into recovery, Ryan and I were sitting on the couch and talking about how he felt now with his new kidney compared to before transplant.

He looked up at me and said that, now, his body felt like it had sunshine in it.

A New Perspective

In some way, I feel as though the empty space where my kidney used to be is also full of sunshine.

Prior to this living donor experience, I spent much of my life criticizing my body for not being good enough.

Too big.
Too slow.
Too fat.
Too awkward.

In my adulthood, I primarily perceived my body as rundown and used up.

As I underwent the various tests to determine whether I could donate, I was terrified I wouldn't pass. Surely my BMI would be too high, or something would be wrong with my body.

But my body was perfect.
And my kidney was perfect.

And there is someone out there right now with my kidney – my perfect, healthy kidney – who feels sunshine in their body, too.

And I am grateful to see my body with this new perspective, in this new way.

Although it doesn't always come easily, I often remind myself of what my body is capable, and feel so lucky I was able to share it with someone who needed it.

Dr. Kogon was so very right: not only was this not the end to anything, it's truly just the beginning.

The beginning for Ryan to live in a body that works, that feels like sunshine.
The beginning for myself to live my life not fighting against my body but proud of it.
And hopefully the beginning for Ryan's donor and my recipient.