New Heart, New Me?

09/18/2026Leave a comment

Identity is such a strange thing. I’ve spent so much of my life trying to figure out mine. Where do I fit? Who do I “go” with? Who am I? What is my place in the world?

Identity isn’t simple. No one is just one thing. We are many things to many people, and we are many things to ourselves. Some pieces are bigger than others. There are parts of our identity that are more comfortable to sit in, that feel more authentic than others.

And right now, I am struggling a little because a big part of my identity has changed. A big part of who I am is different now.

Today, my mom asked, “Do you still have congenital heart disease?”

And I guess the answer is no. But also, both.

CHD is who I was. It is part of how I was born. It brought me struggles and growth; it gave me a community and set me apart. Now I am a heart transplant recipient. Everything is new. A new community, new struggles, new places to grow, new ways to be set apart. A whole new identity. A whole new playbook.

But just because I am now a transplant recipient doesn’t mean I am no longer part of the CHD community. I spent 44 years with a CHD heart and all that entails. CHD was boot camp. It prepared me for transplant life. It taught me everything I know about managing complex medical issues. It shaped my personality, my outlook—my whole life, really.

And though I know my CHD life will always be part of me, there is grief in knowing that, in many ways, that part of my life is over.

I took a lot of pride in living with something that was truly difficult, and in never knowing any different. There was pride in pushing through every difficult day in pursuit of as much normal as I could get, for as long as I could get it.

Moving forward with transplant evaluation and listing was incredibly challenging because I knew it was the first step away from my CHD identity. In a lot of ways, it felt like a betrayal of the kid who fought through it all, even when it was scary.

Laugh if you want, but transplant felt, in a lot of ways, like the “easy” way out.

As a kid, I didn’t really know how to BE a kid with CHD, so a lot of the time, I just wasn’t. I didn’t talk about it much (unless I was in gym class), and when someone asked about my scars, I more than once gave a crazy answer like, “I fell on an axe.”

How does a second grader explain complex congenital heart disease to another second grader?

They don’t.

They tell them they fell on an axe and hope someone changes the subject.

I didn’t want to be seen as different, and I think a lot of the time I succeeded. I didn’t do sports, and I made sure I didn’t give people many chances to spot the differences.

In my teens, the cracks started to show. Things changed as my body changed, and soon enough I was symptomatic and spending my summers in hospitals, getting treatments and having procedures to stabilize heart rhythm issues. There were new limits, new meds, new scars, and, if I am honest, a new chip on my shoulder about this long-dormant issue that was rearing its head.

The hardest part of that time was not knowing ANYONE like me and truly believing I was not long for the world.

I had no proof that life was possible. And if I’m honest, a lot of the doctors I saw weren’t super helpful in dissuading that belief. Many talked about how amazing it was that I was still alive at all. Others wanted to try experimental surgeries that had never succeeded but, according to them, the deaths weren’t a result of the surgery.

I may have told one doctor, “Unless they were all hit by trucks, I think the surgery had something to do with it.”

I do stand by that, but perhaps it was sharper than it needed to be.

I give that scared teenager some grace, and I hope that doctor didn’t take my words to heart. I am friends with more than one cardiologist these days, and I can’t imagine anyone saying that kind of thing to one of them.

And I know those cardiologists because I longed so desperately for a community I could relate to.

As a young adult, I went looking for one and found a local support group. There I met a man named Jason. He and I got on like a house on fire, and one day he told me about a camp in St. Louis for kids with congenital heart disease.

As it happened, I was out of work and had the time to go, so we sent in applications, not knowing how much the camp needed—and wanted—the help of adults with CHD.

Sadly, before we could make the trip together, Jason died suddenly from complications of his CHD.

I was crushed.

My first friend in the CHD community, and this is what happened?

Perhaps seeking out this particular community had been a bad idea. After all, I was looking for hope that I would live, not confirmation that I could die.

When I called Becca, the camp director, to tell her Jason had passed and that she would need to fill two counselor spots, she encouraged me to come anyway. I think she sensed my deep grief and knew I was ready to walk away from a community she understood could be incredibly impactful for me.

I agreed to go, but the whole way there I considered turning around. Even after I arrived, there were moments when I thought about leaving before the kids showed up.

But Becca and the whole staff made sure I felt welcome. They gave me a lot of love and encouragement. And by the end of camp—camp working how it does—I had a whole new family in the CHD community: kids, adults, doctors, nurses, and other specialists who were entrenched in this world I hadn’t even really known existed.

There are more kids with transplants who go to camp than I can count, and they are still considered CHD kids.

So I suppose I am too.

Maybe I just have a new addendum at the end:

Congenital Heart Disease, D-TGA, VSD, ASD, post-transplant.

That seems right.

So, do I still have congenital heart disease?

Maybe “have” isn’t quite the right word anymore. But 44 years of CHD didn’t disappear when my old heart did. It is in the kid who learned how to hide her differences, the teenager who wondered whether she had a future, the scared young adult who went looking for people like her, and the community that eventually became family.

Now there is another piece to add.

My identity, like everyone’s, is still evolving. There will probably be days when it feels clear and days when it feels convoluted. I’m still figuring out what it means to be a transplant recipient and how that new identity fits alongside everything that came before it.

Maybe I haven’t left my CHD identity behind.

Maybe I just added another comma.

Maybe I am just a little more.

20 Days Later

09/07/2026Leave a comment

Twenty days later…

It’s been 20 days since the wildest 24 hours of my life.

Twenty days ago, at 10:04 p.m., the nurse coordinator on duty started calling with a heart offer—and I continued to sleep. She called my family, who also began calling me, and still, I slept. I had taken a sleep aid and was really out to the world.

My oldest sister called the police for a wellness check. My second-oldest sister started pinging all of my devices using the “Find My” feature on her phone (we share a plan). That little trick worked, and at 10:14 p.m., my sister was the one to let me know my life was about to change forever.

Everything since that moment has been a bit of a blur. Be it the absolute adrenaline rush, the meds, or the monotony of days spent in the hospital, it feels like I have been here forever and no time at all.

Rachel, my oldest sister, left two days ago after spending the days prior with me, staying each night on what may be the worst cot in the world.

My mom remains and will continue to care for me in the following weeks. She comes each day to feed me, snooze with me, and entertain me the best she can. We’ll stay at a hotel in Omaha for a couple more weeks after my release while I attend appointments, have labs drawn, and, in general, am kept under a close eye to see how I’m doing.

My first biopsy, two weeks ago, showed level 2 cellular rejection. It was still present after my second biopsy last Monday.

The word “rejection” is, admittedly, a terrifying word to hear when someone has just given you their heart. My nephew for one, would really like them to pick a different adjective. But rejection after transplant does not necessarily mean what it sounds like. My immune system is doing exactly what it was designed to do: recognizing something that wasn’t originally mine and trying to attack it. The anti-rejection medications are there to convince my immune system to stand down, so we will adjust those for best effect.

Cellular rejection is something transplant teams watch very closely for, especially early on. Level 2 is concerning enough that it needs to be treated and monitored, but it is not unheard of, nor does it mean that my new heart is failing or that the transplant has failed. It means my doctors have some work to do getting my immune system and my new heart to peacefully coexist.

I’ll have another biopsy this Tuesday to see how things are responding. My surgeon, Dr. Um, believes the rejection is likely already under control, but that the last biopsy was simply a little too early to show it. We shall see if he is as smart as we all believe him to be. He is optimistic that the next biopsy will show what he expects—and that I can finally leave these four walls before the coming weekend.

I am hopeful, but cautious.

In general, I am doing okay. I have moments when I am frustrated and discouraged. In those moments, I do my best to name the feeling and say it out loud: “I am frustrated.” “This is frustrating.”

It helps keep me from catastrophizing. Things WILL get better, but in this moment, I am frustrated—and that is okay. Even miracles can be frustrating. It doesn’t mean they are any less miraculous.

I do make a real effort to take moments to connect to this heart, to welcome it to my life and body, to connect with it in ways missing nerves prevent.

There have also been moments when I have completely lost it. Moments when anger, fear, sadness, happiness, and frustration have all overcome me, and every feeling is suddenly on full display.

But if I am being truthful, I think I have mostly been numb.

I don’t think my brain is quite ready to do both things at once: heal physically while also trying to comprehend everything that has happened to me in the last 20 days. There is the surgery itself, this new heart beating inside me, the fear of rejection, the medications, the hospital, the uncertainty, the gratitude, and the enormous reality that my life has changed.

Maybe my mind will catch up with my body eventually.

For now, I think healing is enough.

Many have asked if I have had the chance to say goodbye to my heart, to see it in any way, and the answer is no. Not yet.

Before transplant, I was adamant that this was something I would absolutely need. Now, I’m not so sure.

I am going to make sure I don’t lose the opportunity. I’ll make sure someone has access to a photo so that, if I want to see it someday, I can. But right now, it feels like too much.

Just hearing my surgeon explain how incredibly sick my heart was was painful.

I am so proud of that heart.

It carried me through so much. It kept going when it had every reason not to. And after everything we went through together, I’m not sure I am ready to look it in the eye, so to speak.

At least not yet.

There is tremendous grief in that thought, and I don’t think I’m ready for that grief right now.

Maybe someday.

For now, I think it is enough to be grateful for the heart that carried me this far, while learning how to live with the one that will carry me forward.

It is surreal to think about this whole new organ chugging away in my chest. It feels so different. It feels strong. It feels like it is ready to go—just waiting for its new body to get its shit together and heal enough to show off its strength.

Turns out, a heart transplant isn’t like swapping out the AAs.

Between the new meds and the massive amount of healing there is to do, the “feeling better” part takes a while, it’s a whole system reboot and the network is a little unstable.

Tuesday morning I go for my third biopsy, and I am hopeful the results will be such that I am able to finally be released. I hope this not just for myself but for my family as well. As much as I have been through, they have been through it too. And because I truly believe that hard is hard no matter if you’re the one in the bed doing the healing or the one on the cot doing the caring, I want a clear biopsy for them just as much as I want one for myself. We all need a bit of normalcy back.

And before I end this very long update, I need to say thank you.

Thank you to my family, who have dropped everything, lost sleep, sat beside me, worried about me, advocated for me, fed me, made me laugh, and loved me through every version of myself these last 20 days.

Thank you to my sister Rachel for being the zoom arounder, and the lower to the grounder. For spending night after night on that terrible cot beside me, and for advocating for me like no one else can. For knowing when to push, when to ask the question again, and when I need someone else to be strong and loud on my behalf. All during the same week you sent our boy off to college. I promise I’ll try and time my next life-altering event a little better.

Always my sword.

And thank you to my sister Aimee, who has taken on the mind-numbing administrative side of all of this—the paperwork, phone calls, bills, and all of the little things that somehow still have to happen even when someone is busy getting a new heart. Thank you for keeping the wheels rolling and the bills paid when I haven’t had the brain space to even think about any of it. There is so much work that goes into keeping a life running, and you have quietly carried so much of that for me. And for guarding my sanity and humanity.

Always my shield.

And Mom.

I think, in some ways, we have spent 44 years training for these days.

The defect in my heart was never your fault, but I know it has always been your biggest worry and, in so many ways, your most intense mission. For 44 years you have watched, worried, learned, questioned, advocated, protected, and loved me through all of it. And now, here we are, on the other side of the thing we have spent a lifetime knowing might someday come.

I hope you know how deeply I love and admire you. Your strength. Your love. The way you advocate for me. The way you have always somehow known when I needed a friend, when I needed a nurse, when I needed a fighter, and when I just needed my mom.

I made it 44 years with that heart because it was incredibly strong. But I also made it 44 years because of the love and devotion you have shown me every single day of my life.

You helped carry that heart for 44 years, Mom.

Now we get to learn this new one together.

A special thank you to my Uncle David and Aunt Lori for making the trip to come see me. Having you here in the middle of all of this meant more than you know.

Thank you to Anette and Shalyn for keeping things together for me back home while my entire world has been happening here. Knowing that the pieces of my life I can’t tend to right now are in good hands has given me the space to focus on healing.

Thank you to my friends and to every single person who has called, texted, checked in, prayed, sent something, offered help, or simply reminded me that I am not doing this alone. I may not have had the energy to respond to everyone, but please know that I have felt your love even when I haven’t been able to acknowledge it.

Thank you to the nurses, doctors, surgeons, coordinators, therapists, techs, and everyone else who has cared for me. There are simply not enough words for the people who have made it their job to keep me alive and help me learn how to live again.

And then there is a thank you I don’t quite know how to write yet.

To my donor, and to the people who loved them: there is no combination of words big enough for what you have given me. Somewhere inside an unimaginable loss, a decision was made that gave me another chance at this life. I carry that knowledge with me alongside the gratitude, and I suspect I will spend the rest of my life learning what it means.

For now, all I know to say is thank you.

Thank you for the love. Thank you for carrying me. Thank you for this heart.

And thank you for more.

More time. More ordinary days. More chances to make plans and actually expect to be there for them. More chances to love the people I love and to be loved by them.

Just… more.

I don’t know yet what I’ll do with all of it.

But I am so incredibly grateful that I get the chance to find out.

Twenty days later, everything has changed and everything is possible.

Saying Goodbye To A Friend

07/01/202607/01/2026Leave a comment

This is a CT of my actual heart. I remember when I first saw this image, it was like seeing a friend for the first time.

I am about to write down something I have only talked to my therapist about. I am going to need you, like a therapist, to stick with me, because I know what I am about to explain sounds really odd.

At my last appointment with my transplant team, I brought up my desire to be allowed to see my current heart after surgery. This is not an unheard-of thing. In fact, this desire seems to be especially prevalent in people with congenital heart disease. My doctor, while not shocked by this request, told me it could not happen. He said he could arrange a photo, but not a meet and greet, so to speak. It just isn’t something they have ever done. In the moment, I dropped the issue. It likely is a policy far above his head, and there is no reason to waste his time on the whys.

Since then, however, it is something that makes me profoundly sad when I think about it. This is where I need you to stick with me. Can you believe that wasn’t the weird part?

I personify my heart a lot. I think of it as both part of me and separate from me. I separate its actions from my own because my whole life it has seemed to have a mind of its own. My heart is stubborn and strong. It is unpredictable, but familiar. It has been both my adversary and my teammate. Even though it is failing, it is mine, and even as new symptoms emerge, there is still familiarity in it. I know what this kind of rhythm means, and what that sort of pain indicates. I cheer it on as much as I curse it out. I am both proud of my heart and saddened because I know, if given the opportunity, it might just limp along with me to the end. But that end would likely come much sooner, before I’ve had a chance to really do some living.

Now, I know my heart isn’t a person. Just like I knew my cat wasn’t a human. Stay with me. But the situation feels eerily similar. When my cat Gus, the cat who, over our time together, became a part of my soul, had a stroke, it was as close to unbearable as I’ve ever been. There was my cat, my closest companion, an animal who had been by my side through some of the hardest years of my adult life. He was still alive, but he was struggling. More than struggling, by the end, I believe he was suffering. For a couple of days, I stayed near him, pumped him full of meds, and hoped against hope that somehow, my sheer will and love could reverse the effects of what had to have been a massive stroke. He was disoriented and confused. He could barely stand or walk. He seemed comforted by me, but distressed in my short absences, and I’m talking trips to the bathroom. The cat who had the funniest attitude and expression for everything was gone, a shell remained. My heart was broken.

In the end, I had to make the only decision that love would let me make, and I let him go peacefully, hugging him until his last breath, letting him know he was a good boy, and that I knew he tried really hard. This happened three years ago, just before I went to have my first transplant evaluation. This road I am on was beginning, and while I know an animal can’t spontaneously cause a stroke, it felt like he knew I couldn’t take him with me on the journey.

This leads me to the now. To this heart. This organ that I know better than any of my others. My strong, sassy, backwards heart that has taught me every important lesson I’ve learned. It has taught me when to fight and when to rest, when to fold, when to call a bluff, and when to push all our chips in. We make an impressive pair, this heart and I. We have stunned many a medical professional, in both good and bad ways. We’ve caused our fair share of beard scratching and high-fiving over the years. It has never let me down, even when it was clearly struggling.

It is struggling now. That struggle isn’t like Gus, something I saw from the outside. It’s something I feel on the inside. It is present in every beat and breath. I know this heart in a way I have never known anything else. I know its rhythms and warnings. I know its quirks, its moods, its stubborn little tells. I have had a lifetime to learn its language.

And because I know it so well, I know this heart has done all it can. I’ve made a decision, the best one I know how to make. The one that feels compassionate for both of us, and the one I have to believe it wants me to make. Yes, I know that hearts don’t have brains.

Part of what makes this so hard is not just saying goodbye to this heart, but knowing I will have to make room for another one. A new heart will be a gift, and I know that. But it will also be a stranger in the deepest part of me, taking the lead in a place this heart has occupied my entire life. That is a strange and frightening thing to imagine. The idea of having to learn a new heart quickly, while healing, while grieving, while trusting it to carry me forward, is scary in a way I don’t think I fully know how to explain.

I know this heart has done all it can. It has been poked, prodded, wired, and patched in so many ways. As tired as I am, I know it is more tired, and yet it is hard to let it go. It feels a bit like betrayal. It feels like this time I am giving up on it, like I don’t trust its incredible will anymore. I know none of that is true, and not just because my heart doesn’t experience human emotions.

In the end, I want to see my heart to say goodbye. To tell it that it was a good heart, and that I know it tried really hard. And I want to see and hold this miraculous organ that beat every obstacle put before it, that would beat as long as I let it, and tell it that the only reason it is in my hands and not my chest is because it got me to a place where I could imagine there being more in the world, and because it made me want to know what that more might hold.

So yeah, I’m going to put up a bit of a fight. I think we both deserve to say goodbye. My therapist said he would write me a note if that helps, because he believes not only that I can handle seeing my own heart, but that it may be vital to my grief and healing process.

I am not asking to see a medical specimen. I am asking to say goodbye to my heart. Mine. The one my mom made just for me. A little broken, a little battered, but still miraculous. Still beloved. Still mine.

All I am saying is if Stonewall Jackson can have a whole grave for his arm, I think I can have a moment with my heart. I need to thank it before I let it go.

https://www.atlasobscura.com/places/grave-of-stonewall-jackson-s-arm

My Not New Heart

05/05/202605/05/2026Leave a comment

I am not getting a new heart. Not really. No, nothing has changed in my listing status, there have been no red flags thrown. I am still waiting and hoping. That hasn’t changed. But the truth that we all know, and seldom let ourselves think about, is that the heart I receive will only be new to me. It isn’t new to this world. It has lived, it has sustained a whole life in another body.

I imagine my donor’s mother, the first time she heard that heart beat, perhaps in a dim room, with jelly on her stomach. A fast, strong rhythm fills the room, announcing “I’m here!” to the world. At the same time I wonder what it was like on the playground, if it pounded during a foot race, or kept time on a swing. I’m sure it has known both the calm, steady beats of comfort and the quick, sometimes erratic beats of excitement. The heart I receive will have lived a life before it beats in my chest, and that is something I won’t ever forget. It won’t feel entirely mine, it will always carry someone else’s story with it. And that story will not end with them; it will continue with me. So no, the heart I receive will not be new.

Some transplant recipients deeply struggle with the notion that in order for them to live, someone else has to die. And while that is true on its face, it is more complex than trading one life for another. There is no intention behind a person seeking a heart transplant beyond a wish to live a better, healthier life. That desire doesn’t make them responsible for what happened to their donor.

I try to hold that truth without simplifying it or turning it to blame.

I understand the guilt—I do, I have my own struggles with survivor’s guilt—but right now, and I say right now because I know that feelings change like the wind in this process, I don’t feel that guilt. Guilt to me implies responsibility, blame for something that you truly had no part in. The emotion I feel most, in thinking about the circumstances that will surround my transplant, is gratitude, and maybe even a sense of honor.

Don’t misunderstand me. The loss of a donor’s life is tragic and unfair. That truth does not disappear, and it should not be softened or ignored. But accepting the gift that they or their family chose to give does not need to be carried with guilt. I think there can be a quiet kind of honor in carrying that choice forward, in being the one entrusted with what comes next.

As one mother of a donor hero put it to me: “Your donor wants you to live and to thrive that’s why they said yes. And when their time comes, I have no doubt it will be their honor to help you do exactly that.”

And in doing so, their story does not end with their death, but with their gift. Their heart is carried forward with a new rhythm, in a new body, shaped by a different life but never stripped of where it’s been. I think of our mothers, each hearing our heartbeat for the first time—one on a sonogram and one in an ICU. Two moments connected by the same heart, announcing a life beginning in different rooms and circumstances, separated only by time. One heart. Two lives.

When all is said and done, our heart will beat through my ordinary days and extraordinary ones. It will learn my laughter, my fears, my quiet moments, my stubbornness, and my hope. It will adapt to my pace, my breath, my way of moving through the world. And in that way, it becomes something more than just a continuation—it becomes a kind of connection between two people who never met, but whose lives are forever entwined.

Two stories, not merged into one, but moving alongside each other, carried forward, one as an extraordinary gift, the other with endless gratitude.

Tuesday Night Roller Coaster.

04/08/2026Leave a comment

Tonight was an emotional roller coaster, and it started with Garth Brooks.

“Much Too Young (To Feel This Damn Old)” came on, and I was doing fine singing along until the line, “All my cards are on the table with no ace left in the hole, I’m much too young to feel this damn old.” Then my voice cracked and the tears started.

That song has been complicated since Jake passed, and tonight it hit me right in the solar plexus. Between missing him and waiting for a transplant, it set the tone for the whole night.

When I got home, I checked on the fundraiser, and seeing the total did me in all over again. We’ve raised nearly $3,000, and we haven’t even really tried yet. It is overwhelming. It also makes me feel guilty and weird, if I’m honest. I know it is necessary, but that doesn’t mean I have to like it. My brain keeps trying to tell me to give it all away to people who need it more.

Then Amazon showed up with the stethoscope I thought I’d want for listening to my new heart. Instead, I was overwhelmed by the need to listen to my Frankenheart. That took me out too. I can’t fully explain the complicated feelings I have about leaving this heart behind. They may not be rational, but they are real.

This heart has its own strange, familiar rhythm, and it carries more than blood. When I was little and not feeling well, my mom would place her hand in the center of my chest, close her eyes, and feel my heartbeat. It was more comfort than diagnosis, but it always made me feel better. Somehow all of those memories feel bound up in this heart, in its beat, in its rhythm.

After that, it all got quiet. I just sat with everything that has happened in the two weeks since I was listed. The blood draws, injections, phone calls, paperwork, packing, and all the ways I’ve tried to prepare. And still, so much of what comes next is a mystery.

In my best version of events, I walk in on the day, high-five my family and team, march into the OR like a WWE star, hop on the table, and ask if they’re “weady to wock,” like my nephew did when he was three.

I suspect the reality will be less badass and more like a tornado of feral kittens in my mind and stomach.

Now it’s later than it should be, and I’m still awake because my brain will not quit spinning. Tonight feels like one of those nights where the weight of everything lands at once, and there is nowhere to set it down. The personal, the global (seriously!), the practical, the emotional, all of it is just piling up in my chest and rattling around in my head.

I’ll tell you this, I’m not sure the human nervous system was designed to process heart transplant and the possibility of nuclear war in the same day but here I am…

Thanks for reading.

Letting Go

03/11/202603/11/2026Leave a comment

As my evaluation dates grow closer, I keep thinking about being sick enough, and whether I even know what that means. Medically, it isn’t my choice whether I’m sick enough; that decision is above my pay grade. It is however, my choice whether I feel sick enough to agree to being listed, and to accept everything that comes with that.

This has been a very hard thing for me my whole life.

When you live within the paradigm of a person with a chronic illness, or a progressive disease, whatever you want to call it, your definition of feeling healthy is often leagues apart from the average person’s definition of feeling well. That discrepancy has reared its head more than once in my life, much to the confusion of people who live within the paradigm of health and wellness.

Imagine my surprise when, at 13, I discovered that most people don’t experience sudden racing heartbeats that make them feel ill. Or the time I found out that it isn’t, in fact, normal to wake up from a dead sleep gasping for air, or feeling like someone just punched you in the center of your chest. Whoops.

How was I supposed to know? I’d never known anything different. And the doctors weren’t asking those specific questions, so I wasn’t answering them.

“How are you feeling?”
“Fine.”
“Are you having any heart issues?”
“No.”
“Have you had any issues with dizziness or fainting?”
“No and no.”

They never asked, “Are you waking up gasping for air?” or “Do you feel sick to your stomach after exertion?” So I assumed that was A-okay. Upon reflection that was probably a giant dose of disassociation/denial but I have enough to unpack in therapy already so, moving on.

I wasn’t stupid. I understood that the other kids could play in PE class much longer than I could, but I could still play. And because our PE teacher was a bit of a taskmaster with no time for whiners, I often pushed myself beyond what I felt my limits were, just to avoid being singled out by her.

But it’s not like my friends and I sat on the swings at recess and debriefed about how we felt after gym class. There wasn’t really anywhere for a kid, especially one who’s always been pretty literal, to gain context for what I was feeling.

And in a lot of ways, that’s still true.

Am I sick enough?

Is the life I have right now so hard, and so distant from where I want to be, that it’s worth pushing all my chips in and hoping to come out the big winner?

If I am sick enough, what does that mean about me and about the “little heart that could” that still beats in my chest? The heart I’ve been betting on my entire life to defy the odds and prove people wrong. And what about the life that I have made purely out of spite and determination? What happens to all that stuff if I give up now? Is it giving up, or is it moving up?

In therapy I’ve talked a lot about the way I personify my literal heart as a character in my life; both friend and adversary, hero and villain.

What does it mean if I agree to exchange it for one of those fancy, normal hearts? A heart that hasn’t known what it is to struggle for each bit of oxygen it provides. A heart with no scars, no history, no quirks.

What part of me do I lose when I lose it?

I’ve talked about this exact thing so much in fact, that my therapist has suggested he could write a letter to the transplant team explaining why he thinks I would benefit from seeing my old heart once it is out of my chest. He knows how important this relationship (and it is a relationship), is to me and thinks it might be best to allow me a moment to say a true and final goodbye. I tend to agree. It feels a lot like I will have to redefine who I am without this other part of me that shaped me and my life in so many innumerable ways.

Then again, Dr. B talks about “the window” all the time at my appointments, wanting to list me while I’m in the window. That Goldilocks zone between sick enough to need a transplant, but not so sick that I can’t endure it. I trust him. I trust his team. Why is it so hard to trust the process?

I don’t want to miss my best chance. I’ve had a front row seat to watching someone I love make the stubborn choice, the wrong choice, every single time they were offered a choice and killing themselves in the process. I refuse to be that way. I have been a fighter my whole life.

Plus, there are still so many things I would like to be around for in the future. So many things I haven’t done, or seen, or experienced. I don’t want to get to a place where the choice is out of my hands, or worse, where there is no longer a choice at all because I missed that window.

My whole life has been a lesson in endurance, physically and mentally. Every day has been a test of how far I could go, pushing boundaries, pushing limits.

Agreeing to a transplant isn’t endurance. It’s acceptance.

It’s saying, “Okay. I’m willing to put the cudgels down and stop fighting this fight. I’m ready to embrace whatever comes next.”

That’s a big pill to swallow, and I know a thing or two about swallowing big pills.

Maybe agreeing to a transplant isn’t betraying my heart. Maybe it’s the last thing my stubborn little Franken-heart and I will do together, one final act of defiance against the disease that has been trying to end this story for decades.

I don’t know.

I truly don’t.

This is where I’m supposed to wrap things up neatly in a little bow and tell you that I’ve found my resolve one way or the other. But this isn’t that kind of story. The choices are too big, the consequences too permanent, and the questions too complicated to tie up that cleanly.

Right now, I’m still sitting with the question.

Am I sick enough?

Maybe the truth is that I won’t ever feel like I am. When your baseline has always been “make the best of it” and “push through,” the idea of being sick enough for something this enormous feels almost impossible to measure from the inside. Enough implies a limit, and limits are not something I have ever been very good at accepting.

I do know this: I don’t want the choice to disappear because I waited too long. I don’t want the window to close while I’m still standing here trying to decide whether I’m brave enough to walk through it.

So for now, I’m doing the only thing I know how to do. I’m showing up. I’m asking the questions. I’m listening to the people who know more than I do. I’m putting my trust in the people who deserve it, and I’m taking each step as it comes.

Or at least I’m aspiring to do. In reality, I’m already worrying about several steps down the line. I need you to work with me here; I’m trying to keep us all optimistic.

And, in the middle of all that trust, hope and aspiration, I’m trying to figure out what my stubborn little heart and I are going to do next.

Perhaps, the bravest thing we have left to do together is let go.

CHD Awareness?

01/21/2026Leave a comment

Last night, while scrolling, I stumbled across a set of images about congenital heart disease. I was not looking for them. They simply appeared. And if I am really honest, they were about the last thing I needed to see after a day of watching appointment after appointment populate my hospital’s patient portal, while also grappling with the heavy emotions of transplant evaluation, again.

What surprised me most was how upsetting they were, even now, even after decades of living with congenital heart disease as an adult. I still carry a familiar tension. I need support, and I also worry deeply about asking for too much of the people who love me. Those two things have always lived side by side in my body. Seeing these images brought that conflict straight to the surface.

This image frames childhood illness as chaos, exhaustion, and loss caused by the child’s condition.
It turns caregiving into spectacle and quietly positions the child as the source of stress, fear, and burnout.

I want to be clear about why images like these are damaging, and about the difference between what a “heart mom” or “heart dad” might see, versus what a person living with CHD sees.

I am a 43-year-old adult living with congenital heart disease. I grew up as the child everyone worried about, planned around, and tried to protect. Children with CHD learn very early to read the room. We learn to track tone, tension, and fear long before we have language for what is happening inside our own bodies.

Many of the recent AI-generated “awareness” images circulating online depict parents crushed under the weight of CHD. They show caregiving as collapse, exhaustion, and spectacle. Even when shared with good intentions, they carry a powerful implied message for the child at the center of the story.

You are the weight.
You are the cost.

That message sticks.

I know this because I have lived it. When I was a child, my father once joked that I was “more trouble than I was worth.” He did not intend harm. It was meant facetiously, a throwaway comment. But it landed squarely on one of my greatest fears. I internalized it, and I have been unpacking the impact of those words in my life, including in therapy, for the last 30 years.

Children with heart disease already worry about how much they ask of the people who love them. They already carry guilt that is not theirs. Vacations cancelled. Trips cut short. Bills expanding. Time off work dwindling. Over the years, through my time with kids at heart camp, I have seen this weight show up again and again. Children worrying about being too much. About causing stress. About being the reason someone else is tired, overwhelmed, or afraid.

This is why these images matter.

I have created CHD-related graphics myself in the past. I believe there is a meaningful difference between imagery that centers care, advocacy, and love, and imagery that turns the child into the source of suffering. Framing matters. Symbolism matters. What we choose to emphasize shapes how children understand themselves.

This image was created to center protection, advocacy, and love without portraying the child as a burden.
The difference is framing. Children deserve to see themselves reflected as cared for, not as the reason someone else is breaking.

Content that frames illness as something a parent endures because of a child does not raise awareness for that child. It quietly teaches them that their existence is what broke someone else, often the very person they turn to for comfort and care. A parent should be standing beside their child in the fight, not cast as someone crushed by them. A child’s heart condition is part of who they are, but it is not all of them, and it should never be treated as the most important part, even when it demands the most attention.

This kind of framing does not stop with images. It shows up in the language we use, too. Do not even get me started on the label “heart warrior.” I understand why people reach for it, and there are times it IS empowering. It is meant to honor resilience however, timing and situation are key. But for many of us, it carries an unspoken pressure to be brave at all times, to endure without complaint, and to make our suffering palatable to others. When you are called a warrior, fear starts to feel like failure. Grief feels like weakness. Needing rest, softness, or support can feel like letting people down. Children absorb that too. They learn quickly that being loved is tied to being strong, even when they are exhausted, scared, or in pain.

All of this is why these conversations feel so fraught, especially when they happen in public. We are not just reacting to a single image or a single word. We are responding to years of messaging that asks children to carry guilt quietly and to perform strength and bravery convincingly.

When I tried to engage with the person who created these images, my response was not as constructive as it could have been. I was reacting from a place of hurt, and I wanted to give some of that hurt back. It was not my best moment. At the same time, my lived experience was dismissed rather than heard. That dismissal is something many people with chronic illness or disability encounter repeatedly.

We are often asked for our insight or guidance, only to have our reality rejected because it is uncomfortable. Because it does not allow others to pretend nothing is or can go wrong. Or because it requires seeing a child as a whole person who needs many kinds of care, not just care for their disease.

Honoring parents and acknowledging how hard caregiving can be does not require turning children into symbols of burden, martyrdom, or collapse. I truly believe that parents of sick children are incredible. They do carry a great deal of weight, and they deserve to be honored and supported. But not because they are surviving their child. Because they are fighting alongside them. Because they know how to make the moments better, even when they cannot fix the illness.

I want these parents to be proud of what they do. I am deeply proud of my own mother and everything she has faced with me. That is exactly why images like these hurt.

There are other ways to tell this story. Picture yourself not as someone crushed under the weight of your child’s illness, but as someone standing beside them, clearing a path. A parent whose coffee fuels vigilance and care. Whose notebook of symptoms and questions is not evidence of collapse, but a tool of advocacy. Not a martyr, not a survivor of their child, but a partner in the fight.

I believe most people share images like these with good intentions. I am simply asking that as CHD Awareness Month approaches, we also consider their impact, especially on the children who grow up absorbing these messages long before they have the words to question them. Their feelings and well-being deserve to remain at the center of our advocacy.

Not An If…

01/10/202601/10/2026Leave a comment

On the drive home from my most recent doctor appointment, I didn’t feel dramatic or panicked. I felt quiet. The kind of quiet that settles in when something has shifted but hasn’t fully announced itself yet. I drove, followed familiar roads, and let the conversation replay in my head. This time, when he said the word transplant, it wasn’t like the first time. It is weird to have become accustomed to those words, that idea, over the last couple of years. The first time, it felt like all the air had left the room, like the floor and ceiling had suddenly flip-flopped, and I was listening from 10 feet underwater, words muffled, unable to breathe. This time it was different. When I looked at my sister and she at me, our eyes met in that quiet place between hope and acceptance. We wanted different, hoped for different, but knew the score and that I’ve been living in over-time for a while and perhaps I’ve shot my last hail Mary to save this game.

That night, at home in my own bed, sleep came and went. I think I saw each hour of the night, some for a moment, some for an hour or more. My body was exhausted, but my mind kept circling the same thoughts, not urgently, just persistently. Somewhere between waking and dozing, I realized I was no longer thinking only about what had been said in that room, but about everything that had led me there. The routines I’d built. The changes I’d made. The story I’d been telling myself about why they mattered and what they could achieve.

It was in that space, between the drive home and the restless night that followed, that something became clear.

I think part of me forgot why I started working out, taking Zepbound, and eating healthier in the first place. The last time my case was presented to the transplant panel, I was overweight and for that reason, much like Shark Tank they were out, and I was not considered a good candidate.

Somewhere along the way, maybe because I am stubborn, or because I have a deeply ingrained “watch me” attitude, I convinced myself these changes were proof. Proof that despite what “they” said, I could exercise my way out of a heart transplant. I took it as a challenge, a double dog dare to do the thing that no one else had done before, as if no one else had thought of it. Now, thinking of those words, I hear understanding and empathy. They weren’t challenging me. They were letting me know that getting healthier is always a benefit, but the goal should be to manage, not cure. They were trying to let me off the hook, and I just put myself right back on.

I tend to hear statements like that as challenges. It is how I hear most things people tell me I cannot do. My brain hears “can’t,” and my soul says, “wanna bet?” I will beg, borrow, and steal to turn the can’t into a can, the won’t into a will, the don’t into a done.

But it turns out they are right. I cannot exercise my way out of this. And instead of that realization feeling like defeat, it feels like permission. Not permission to give up, but permission to take the pressure off myself. Permission to take a breath and know that while I can do everything in my power to improve the outcome, some things simply are. Transplant isn’t an if, it is a when, and that when may be closer than I had hoped.

Letting go of that pressure does not mean I stop caring for my body. It does not mean the workouts were pointless or the changes meaningless. They still matter. They matter because they help me feel stronger, because they give me better days, because they make living in this body a little more comfortable and a little more mine.

What has shifted is the reason behind them. I can no longer chase an outcome I cannot control. I need to stop treating my body like a problem to be solved or a test I must pass to earn worthiness. I have to care for it because it is the only one I have, and because it is already doing the best it can.

There is grief in this realization. Grief for the version of the story where effort alone could fix everything. Grief for the illusion that if I just tried harder, pushed more, proved enough, I could outrun what has always been part of me. Letting go of that story is a bit painful, but I know it is necessary. It is also a relief. Relief in no longer measuring every good choice against an impossible finish line. Relief in knowing that my job is not to defeat my heart, but to live alongside it. To support it where I can, to listen when it asks for rest, and to stop demanding that it be something other than what it is.

The last couple of days, I’ve noticed an internal tug-of-war. Part of me wants to prepare everything, simplify everything, get my ducks in neat little rows. Another part of me wants to lie down more, to rest in a way that feels almost instinctual, like a bear knowing it is time to hibernate. At the same time, I want to keep moving my body, eating well, and investing in the future I still very much hope for. On the other hand, I want comfort. Small treats. Familiar shows. Soft things. (No matter how much I talk about wanting a cat, I cannot have one. Not in a box. Not with a fox. Now is not the time, and while I may whine about it, I also know it is true.)

None of these urges cancel each other out, even though they feel contradictory. They are just different ways my body and brain are trying to keep me steady in a season that is anything but.

These last few days, overwhelm and numbness seem to compete for control, and neither quite wins. What’s left is a quiet middle space. Not peaceful exactly, but contained. A kind of emotional low-power mode. I am learning that this does not mean I am avoiding what is happening or failing to process it. It means I am holding things carefully, taking them in doses I can manage.

Thinking about transplant is strange, and my feelings about it fluctuate wildly. It is complex and deeply emotional, filled with hope and terror in equal measure. The idea of how I might feel once a new heart beats in my chest is exciting, and it opens the door to images of a life I never thought possible.

I picture myself on mountain trails. I imagine morning jogs with a golden retriever (Did I borrow it? Did I steal him? Is he mine and I finally pulled the trigger on a dog named Tom Hanks?). I am doing those things purely for fun, because I am told, they can be fun when it doesn’t feel like fighting for your life. I see myself going, and doing, and being someone different, (somehow taller?), freer, less constrained by the quiet calculations and constant double-checking that shape my days now.

And then my thoughts shift to the reality of getting there. All the pieces that have to fall into place. The process of being listed, ranked, and waiting. The logistics, the uncertainty, the surrender to timelines that are not mine to control.

Then there is saying goodbye to the part of me that has shaped me into who I am, the only rhythm I have ever known. That part that I have been angry at, indebted to, bargained with, fought for, fought with, wired and medicated, all so we could blow out one more set of candles together. And of course there is the hardest part, I think, for anyone needing this particular kind of transplant, knowing that for me to receive a new heart, someone else must no longer need theirs. That truth sits heavy and unavoidable. It mixes hope with grief, excitement with reverence. It is the part that reminds me this is not a miracle without cost, but a gift born from unimaginable loss, a loss I have known, a loss I have witnessed, a loss that often feels like too high a price for someone who has squeezed 43 years out of a life they said might not even last a year.

Right now, I am holding all of this at once. Hope and fear. Gratitude and grief. Determination and exhaustion. Some moments I feel steady and grounded, and others I feel raw, distracted, or not quite like myself. None of it is performative, and none of it is permanent. It is just where I am.

If I seem different, quieter, sharper, or more emotional than usual, I hope there can be patience for that. I am learning how to live inside uncertainty without hardening myself against it. I am doing my best to show up honestly, even when that honesty looks uneven.

I still believe in forward motion. I still believe in caring for my body, in finding moments of joy, in imagining a future worth hoping for. I am simply learning that hope does not have to be loud or singular to be real. I don’t have to play the part of optimistic sick person for people to enjoy my company. Sometimes it is complicated, sometimes it is fragile, and sometimes it is just the choice to keep going, one day at a time.

Listen to Your Body

11/13/202511/13/2025Leave a comment

For as long as I can remember, people have told me to listen to my body. It was practically the soundtrack of my childhood. I heard it from nurses, from my mother, and most recently from my cardiologist, who said it with the same energy as someone offering ancient, mystical wisdom. Going to a high elevation? “Listen to your body.”

It sounds gentle and intuitive. It sounds like something you’d hear during yoga while someone rings a tiny bell. But for me, that phrase has never meant serenity. Listening to my body has always meant one thing: prepare for impact.

My body has never been a calm inner compass. It has been a 24-hour breaking news alert system. “This just in, you might be dying…” Numbers. Readings. Symptoms. Side effects. Every twinge a possible emergency. Every flutter a potential disaster film in the making. .

“Is this a headache or a stroke?”
“Chest pain or arthritis?”
“Am I tired or am I fatigued?”

And my personal favorite: “Do I have a blood clot?” A diagnosis I have never had in my entire life, but a theory my brain presents with the enthusiasm of a kid showing you their newest treasure.

After years of this, listening stopped meaning awareness. It became surveillance. It was less “inner peace” and more “airport security.” And thanks to the alphabet soup of C-PTSD, OCD, ADHD, and other neurological party tricks, that vigilance was cranked up to maximum volume.

To be fair, I was born with a complex heart condition, so paying attention mattered. Small shifts really did mean something. But somewhere along the way, I began to believe my literal survival depended on catching every flicker of sensation before it turned into catastrophe. My body became a project, and I became a project manager who never got a day off.

Eventually, something rewired itself. I stopped recognizing my body as a place where emotions lived. Sensations were never just sensations. They meant illness or medication changes or tests or occasionally “Hey, for real though, you might be dying.” A racing heart was not fear. Tightness in my chest was not sadness. My body wasn’t allowed to feel; it was only allowed to signal.

Even professionals played into this without meaning to. A dull ache? More tests. A weird flutter? More medication. A moment of discomfort? Let’s throw in a scan for fun. No one, including me, considered that my body might also be speaking in the language of emotion.

By the time panic attacks appeared, I’d spent years responding to every sensation as if it belonged to my heart. So when the symptoms started, the doctors and I followed the same script we always had; tests, scans, monitoring. It wasn’t until we ran out of physical explanations that we finally realized: my body wasn’t warning me about my heart. It was trying to tell me I had feelings I’d never dealt with, and my mind was tired of waiting it’s turn.

Now, when I try to feel my feelings, I often get static. What I hear is the echo of a system that kept me alive but no longer matches the life I’m trying to live. Any detachment I experience is not apathy. It is survival being a little overzealous and not knowing it can clock out now.

Even the most basic emotions can hit the old alarms. I rarely assume I am having a feeling. I assume I am having an event. The smallest beep from a microwave or phone still makes my brain behave like it is back in the hospital, ready for a plot twist. It is very Lost in Space. My mind goes full B9 yelling, “Danger, Will Robinson,” and my system responds as trained: shut it down, stay calm, stay alive.

These days, I am trying to listen differently. I am learning to notice the quieter signals: the warmth of a blanket, the gentle rhythm of breathing, the moment of contentment when a room feels safe. I am teaching my body that not every sensation is a threat and not every feeling requires medical intervention. Some things can simply exist without becoming a diagnostic mystery.

People love to tell those of us with lifelong medical conditions to be strong. But strength does not always look like vigilance. Sometimes strength looks like unclenching your jaw, and relaxing your shoulders. Sometimes it looks like rest. Sometimes it is trusting that your body can communicate without sending up a flare. A whisper can be just as wise as a wail.

I am not trying to unlearn survival. Survival has been my longest relationship. I am simply trying to expand it, to let it include moments of ease and belonging and maybe the occasional emotion without the immediate assumption that the end is near.

So when something rises in my chest now, I pause. I breathe. Take a quick look at my vitals, just to satisfy the tiny intern who lives in my brain. (I am still me guys.) But when everything comes back normal, I remind myself that a feeling can simply be a feeling. A heartbeat can simply be a heartbeat. And sometimes the noises I once treated as danger are nothing more than the ordinary soundtrack of being alive.

Maybe this is the real meaning of listening to my body. Not scanning for illness, but noticing the quiet whisper of an emotion before I mistake it for something medical. Not bracing for danger, but letting myself recognize sadness, or joy, or fear, or grief as themselves. I spent most of my life believing feelings were symptoms. Now I am learning how to tell the difference, and even more than that, how to let emotional feelings exist without rushing to diagnose them. It turns out my body has been trying to speak in many languages, and I am finally learning to understand more than one.

Tightrope. (You don’t look sick…)

09/11/202509/11/2025Leave a comment

Every day, I walk an invisible tightrope. Step by step, I inch forward, steadying myself, fully aware of the drop below. Chin up. Smile. Do not let the audience see the tremor in my hands or the heaviness in my bones. They expect composure, strength, even grace in this precarious balancing act.

So I play my part. One foot, then the other. Smile for the crowd. Hide the weariness. The rope wobbles, but the performance must remain steady. The crowd applauds, but they never see the fatigue, the fear, the longing for solid ground.

Like a Flying Wallenda, I never auditioned for this life; I was born into it. With no other choice, I have mastered the theater of survival, the art of balance, and the silence of exhaustion hidden behind a smile. The rope stretches on, longer and farther than I ever imagined, and though there are days I ache to step down, still I walk. Because the show, it seems, must go on.

The show is my daily life. Over the years, I have learned that nobody likes a sad sack, and people can only tolerate one for so long. But in truth, I am not sad. That part is not an act. Sure, there are days when I do not feel well and must paste on a smile, but even then, I carry joy. I love the life I have built within the confines of my circumstances, and most days, even the hard ones, I am happy.

Still, the act causes confusion. Because I do not “look sick,” “act sick,” or often show the cracks in my armor, people struggle to reconcile the visible with the invisible. Now that I have added workouts as part of my healthcare, it baffles some even more, and I understand why. It is hard to grasp that while I can lift weights or walk a mile, I cannot work an eight-hour day. My tank does not hold that much fuel. Heart failure has diminished my capacity, so I must ration what I have. Doctors’ orders.

Every morning, I wake up and prioritize. At the very top, above all else, is my heart. Keeping it as strong as it can be is not a luxury, it’s an imperative. It is the rope itself. Without it, there is no performance. And I am not ready to say I want a new rope, so it must come first. Because of that I’ve had to drop other things, like 2.5 hours of my work day. I just don’t have the fuel to do it all, and trying makes me so sick that I can’t do any of it.

I cannot help what others understand or do not. I refuse to wallow in self-pity or bend myself into the narrow mold of what a “sick person” should look like or act like. Even doctors have been baffled, studying test results that scream decline, then looking at me, upright and smiling, and wondering how someone who on paper must feel miserable is not a cranky, bitter mess. And if I am honest, there are some days that I am but that is nobody’s business but mine (and my therapists). I get to present myself to the world in whatever way I choose. I choose a life of joy, fun, determination, and optimism, even if the world around me can’t make sense of it. So, one foot, then the other, I continue forward.

This is my act. This is my balance. This is my rope. And though the crowd may never fully understand, the show is not about them. It is about me, still walking, still smiling, still here.