Tag: transplant

20 Days Later

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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

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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

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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.

Not An If…

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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.

Vaguely Nauseated and Kicking Ass

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Next week, on September 18th, I will have been vaguely nauseated and kicking ass for six months. Vaguely nauseated? Yes. Zepbound, the weight loss, heart failure, diabetes prevention, fatty liver resolving, ADHD improving, OCD quieting medication I am on, is not all sunshine and weight loss. I spend about 3-4 days after my shot each week vaguely nauseous. Most of the time it is just a nagging unease in my stomach, but especially on weeks my dose is increased, it can make me so nauseated I become sick. It is absolutely still worth it, did you see all those things that studies are finding it improves? And I have all those things! 

This week I went to my transplant team in Omaha and saw my doctor for the first time in  six months. My last appointment was with his PA, so he has not had the pleasure of my company since the Zepbound and all of my efforts started. I say this with absolutely no irony, homeboy was darn near giddy with my improvement. My BMI has gone down significantly and is now within acceptability range for transplant. If you remember back to the end of December last year, I said this “If there is anything I have learned through this whole process it is that I shouldn’t bury the lede, so here it is, after being presented for a second time, my case for heart transplant remains on hold and I have not been listed…This is actually good news in its way, this means that I am stable and strong, and I can keep going without a transplant. Once again my weight plays a large factor in this decision, and I am again not angry about that, though I am a bit annoyed I didn’t have a shot at my new medication for a while before my case was presented.”

A more accurate representation of what that meant isn’t that I was stable and strong, it was that I was stable and too fat to get a heart that would be worth trading mine for.  It meant the heart I have currently is plenty strong if my choices of new hearts were going to be old and not particularly strong themselves. As much as blood type and antibodies come into play with transplant, so does size. If you are a 250 pound person you can only accept a heart within 10 pounds of your weight. If that weight is 250, the problem becomes anyone that is within that weight and not 6’2’ + is in the morbidly obese category themselves and not a great candidate to donate. If they are 6’2” or more the heart will likely be too big for my chest, even if it is a healthy heart. It is a whole Cinderella and the slipper situation. At the time I was relieved I was denied again, I truly want to keep this heart as long as I can, but I was also ticked off that I was not able to get the medication I needed to lose weight in time for it to affect the outcome of that particular transplant tribunal (everybody wants to win right, and nobody wants to be told they are chonky). 

Now, I have had that medication for 6 months. I have also been going to the gym three times a week for those 6 months, I have been watching every calorie going into my body for those 6 months, which means that I have lost the weight that was needed in order to be better qualified for transplant. To be ideal for transplant, I have another 50 pounds to go (this is not MY goal weight, if I get there great but I am not going to go nuts trying to achieve this weight, my goal is 20 more pounds). The thing is, I am feeling better. Apparently, people who eat right and exercise feel better? Seems fake, but okay. I have not cured my heart failure, but the blood test that indicates heart failure while not resolved is the lowest it has been in 5 years. Now my days don’t feel like punishment for living anymore – I was truly struggling before, and now while I am not the picture of health, I have a lot of my normal activity back. All of this to say I’ve unsheathed a double edged sword. 

In November I will have my VO2 Max test again. I have been below the cut off for transplant consideration in that test the last three times I have done it. An average person’s score is somewhere between 50-60. Mine is barely 13, and has been for some time. If I flunk again in November my doctor will now be able to put me forward for transplant and I will likely be approved. If that test doesn’t improve there will be no reason not to list me. 

Isn’t that good news?

It is. But it also isn’t…

I thought you wanted a new heart? I sure did.

And in ways I still do, but now that I understand the process more, I want that to be as far in the future as possible. My doctor said it in my last appointment, if I only want to be transplanted once in my life, then it would be great to wait as long as possible and be as healthy as possible in the meantime. If I am super honest I would love to ride into the sunset with the heart I came with but I also want to be around to see what kind of shenanigans my nephews get up to as adults, so it isn’t likely that this ticker is going out with the rest of me. I am not saying I should have stayed overweight to avoid transplant. I am saying, being overweight took it off the table. I am hoping that now I am healthier, I can put it near the back of the table, or over on the counter even. Anywhere not right in front of or on my plate. 

All of this comes down to that test I have in November. I don’t get to fail it again. I will pass or be put forward again. My goal is to get a 15, two points of buffer between me and that dreaded 13. My sky is the limit goal? 23. Ten glorious points away from the list. Proof that maybe I can exercise my way out of this after all or I can get nice and lean and otherwise healthy so my choices of hearts are better, and my recovery smoother. Until then, it is the gym for me. It is 1500 calories a day and 1800 on weekends. It is taking my meds and doing all I can to stay as healthy as I can. It is participating in my care so no one can say I didn’t try as hard as I could. Are you still with me? My cheerleaders have been my saving grace this whole time. Your support means so much to me, and motivates me to keep going. Thank you for being here. 

Until next time. 

Rehab Week 3

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As my third full week of cardiac rehab is coming to a close, I wanted to take a moment to reflect on my experience in that time. There are changes happening for sure, but not all of them are ones that I expected. When I started rehab, I expected to get stronger, increase my stamina, and maybe (hopefully) lose some weight. I didn’t expect my mental health to improve, my family to join me in my quest for better health, or if I am honest, to be very successful. I was hopeful when I started rehab but it felt similar to hoping there would be a pony under the Christmas tree. I might have really wanted it, but I doubted I would really get it. I am so glad to have been wrong. 

A big part of cardiac rehab, and a part that I was pretty sure I was going to stink at, was getting my diet under control. There are a few things where diet is concerned that I am excellent at, for example, I am really, really good at watching my sodium intake. It is a rare day that I go over my allotted 2000mg and if I do it isn’t by much. Edema fears my sodium tracking skills. What I am not (or wasn’t) good at, is tracking calories, fat, carbs, anything delicious. My thought has always been a bitter one, “If I have to give up salt, I am not giving up anything else.” and I would add unsalted butter, and eat sugary snacks with reckless abandon. I knew when I signed up for rehab that this attitude would have to change, if I was going to give this opportunity the best chance to make me feel better it couldn’t just be three days of exercise a week. Which is why, 25 days ago I started using an app called Lost It! I feel like they should start paying me because I sing its praises to anyone who will listen. I have religiously recorded every food that passes my lips, and I am happy to report that out of 25 days, my calories have been under budget every single day!

Reasons I love the Lose It! App:

  • Losing weight is gamified in a way I personally enjoy, for example each day I log all my meals, it contributes to my streak. I currently have a streak of 25 days and I will be really sad if I mess up my streak before day 100. 
  • You can buy a subscription for life. Instead of paying $50 bucks a year, you can pay $120 bucks and have the app for life. When you are making a lifestyle change, this option helps solidify that decision. I am not just doing this for the year I am subscribed, this is forever. Perhaps it is just the way my brain works but that distinction makes a difference. 
  • They have a TON of verified food options, be it fast food or products. Verification means the nutrition information that they have comes straight from the horse’s mouth. 
  • I am constantly earning little rewards or encouragement. It tells me when they see a healthy pattern such as, I have lower calories for the day when I eat eggs for breakfast. It also tells me how much weight I have lost as compared to household objects (I have lost a desk lamp or 5 pounds) and of course keeps track of my logging streak. 
  • My sister is using the same app and we can share our progress, recipes etc. 

Speaking of my sister, talk about something unexpected that has come from rehab! I am incredibly lucky and thankful to have my big sister join me both in eating better and adding exercise to her routine. It is awesome to go on this quest for wellness (I am sorry I really hate calling it a journey, a journey makes it sound like I am going on a nice trip. A quest, I think, leaves room for overcoming challenges and doing hard things.) together. We check-in, motivate and complain to each other. It has been nice to not feel like I am the only one going through this shift in the way I live my day to day.  It is not my place to talk about her business on the internet but it is pretty safe to say that most people could benefit from a shift to a healthier lifestyle. It is very motivating to know that we are in this together and that she wants to be healthy enough to hang out with me (and her kids I guess)  for a long time after I get a new heart. 

Another thing I didn’t expect but am greatly enjoying is a newfound sense of determination. I think sometimes when living a life that has a lot of limits, those limits start to encroach on parts of your life where you aren’t truly limited. I think there comes a point that you are so used to limits that you impose them in places that they don’t naturally exist. Feeling my edges so to speak has really given me confidence to push myself a bit harder in places that I hadn’t been. Instead of being a lump when I get home, I can spend 20 minutes cleaning the kitchen, or the evening doing laundry. My days don’t HAVE TO end at 3 p.m. I find myself waking up in the morning feeling energized and excited to get to rehab or my solo home workout. I think the best way to describe it is, it feels a little like I am sticking my tongue out and blowing a raspberry in the air, and saying “You can’t catch me!” to my own heart failure. I also think there isn’t a small part of me that is annoyed that I have thus far been unable to get the weight loss medication I have been prescribed due to shortages and misunderstandings. I feel a bit like Thanos saying “Fine, I’ll do it myself” to the system that is keeping me from receiving that particular weight loss jump start. 

Perhaps it is because of the new determination, paired with the feeling of safety that rehab offers that I feel that my efforts at the gym and in my diet have been successful. I am a person who regularly starts and stops this kind of quest. When the going gets tough, I get going…home. Go big or go home? Awesome, I’m headed home. I think I have reached the perfect blend of spite, safety, and determination to be successful. My workouts have quickly increased in length and effort over the last 3 weeks, I am going farther, longer, and faster each day. I feel stronger, physically and mentally. I am exhausted, but because of effort not because my heart is sluggish and my mood is poor. 

I am excited that I have 11 more weeks to keep getting stronger, and learning more about what I really can do. Hopefully in that time my muscles will figure out that this isn’t going to stop happening, and will calm down about how hard I am working them. In fact, the muscle aches are pretty much the only thing I can say that is negative about any of this. Does anyone have any hot tips about muscle recovery? My arms and legs are noodles for the whole night after a hard workout. Is that just what happens when you work out hard? Am I doing something wrong?  Do I just need a massage? Are my arms and legs secretly noodles and it is only apparent when I try to work out with them? Any help is appreciated. Thanks as always for cheering me on. You guys are awesome and it is really nice to hear from you all, and have your support. In addition to everything else, it is very impactful to know that I have such an awesome cheering section.

Rehab Day 1

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They tried to make me go to rehab and I said, “Hell yes! Finally.” Not exactly as catchy as Amy Winehouse but sometimes the truth isn’t catchy. Today, I completed intake for 36 sessions, 14 weeks, of cardiac rehab and I could not be more thrilled. Over the last few months I have tried working out on my own only to run up against the same issue, time and time again. I just get scared. I know to you heart-healthy people that is an odd issue to have, but there comes a point where I don’t know if I am pushing myself or pushing my luck. When that happens I find myself giving up, too scared to keep going. That is why when I saw my doctor last month I asked if I could do more cardiac rehab, and he approved. I knew I would be rolling the dice with insurance whether they would approve it for me or not, and was prepared to only have 6 sessions if they did. Getting 36? A full course? I am so excited. It feels like I finally won a battle after a long, long losing streak. 

There are so many benefits of cardiac rehab for me that go beyond just the customized workout. For one thing, the scheduled appointments assure I will actually attend. It is far too easy for my brain to talk me out of going to the gym, there is no accountability, and I can justify just about any reason to skip. Conversely, I don’t miss appointments, I am the person who is early to everything. The structure of these sessions will be great for my ADHD brain. They will also give me a safe place to feel for my edges, to learn better what my body feels like when I am entering the danger zone, and when I am just pushing. Learning this will hopefully help me when working out on my own, to have the confidence to continue. 

Things I love about cardiac rehab: 

  1. Old men exercising in jeans. I would say 90% of the people in cardiac rehab are men over the age of 60 (heart attacks likely), and of those men 90% wear jeans to work out. It cracks me up. 
  1. I am a unicorn to them. These nurses are used to working with the aforementioned old men in jeans with acquired heart disease and a tendency to push back about all the lifestyle changes they are being asked to make. Not me, this has been my life for 41 years. They aren’t asking anything of me that hasn’t been asked before. Plus, both this time and last the nurses remarked about enjoying learning about my heart, and seemed very amused by me in general. I love being amusing, and I am happy to provide a little break from the old dudes. 
  1. Sonic ice! I love it. Who doesn’t love Sonic ice, that they can access for free? 
  1. Constant feedback on my heart while working out. Blood pressures, BPM, pulse ox, they check it all, and tailor my work out to what my body tells them. 
  1. Help from an honest to goodness nutritionist on tailoring my diet to better serve me. I do a good job with this but guidance and feedback are so nice. 
  1. This is a medication free way of regaining some of my lost heart function and I am all for anything that doesn’t require another pill. 

I start my first real workout tomorrow and am so excited to begin. If you see me, please ask me how it is going, or shoot me a message. I need all the encouragement I can get, exercise has long been something I feared and gave up easily on. The more positive reinforcement I can get the better!  In fact, one of my questions on my intake paperwork today was about my support system. It wanted to know if I had anyone I could call if I needed support. I didn’t have to think about that question at all, and marked that I had MANY people who I could call if I needed. I truly believe that has always been my magic feather so to speak, and lets me keep flying. Thank you for that. 

Chasing the Carrot

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I kind of lost it today. It has been a long, arduous month and I guess I only had exactly 31 days of patience in me. The beginning of the year is always a fun time for me (really any of your chronically ill friends, check on us, we are not okay). What is super fun about it is that, when insurance deductibles start over nothing is automatic. If you aren’t paying close attention there is a good chance things you’ve had on auto-pilot for the last 11 months have just completely broken. No warnings are given, if you are not proactive, you will not find out until you don’t have the medication you need, and trying to fix it from that point is like a clueless politician trying to help after a hurricane, paper towels are nice but my house is a fish tank.  

I have about six medications that have co-pay coupons, all of which have to be individually reapplied to their respective medications taking the co-pays down from $300-$600 (on $1200-$8000 meds) to $10, if you are thinking to yourself, that’s not right, you are correct and perhaps you’d like to vote for people in favor of Universal Healthcare. Somehow, each year no one knows how to get at least one of these coupons applied, this year it was two. In addition to that, one medication needed a prior authorization, and another a physician approval for refill. All told I have probably been on the phone with my pharmacy for three, maybe four hours in the last two weeks conservatively. 

Yesterday, I spent an hour on the phone with my insurance. All for a medication that I only knew was in danger of not being delivered because I looked, not because I was warned by anyone, or any system. The pharmacy has already sent my med packets without it. I have been working on this for TWO WEEKS and I missed the cutoff to have it included in my shipment. Now I am in danger of not having it suddenly for the first time in 5 years (I run out officially in 6 days). The things it says can happen if you stop taking it suddenly, are not great. Which may explain the franticness of my calls. After back and forth with the pharmacy, with my doctor, and with my insurance (for over an hour remember) today I was told this medication not only was denied, but not eligible for appeal or exception. I spent an hour talking to an insurance representative yesterday! She went through my policy with a fine tooth comb, and she told me, all I needed was the pre-authorization from my doctor. My doctor sends it, and within an hour it is denied. You can’t tell me that the representative didn’t know that this medication was going to be denied based on the new formulary my insurance has. I don’t blame her for my formulary, I don’t blame her for the fact this isn’t covered, that is above her pay grade. I am mad that there is no way she did not see after looking through all the things that we looked through yesterday the REASON this medication was suddenly being denied even though I had a current pre authorization on file and instead of telling me that it was denied, she said to ask for a new pre-authorization.   

This medication has been keeping my head from exploding off my body for the last 5 years, but I guess now I get to either have completely debilitating migraines again (as opposed to the only mostly debilitating ones I have now) or try a different form of the medication that my doctor already was pretty sure would not work for what I needed it to do. I am SO limited on the kinds of medications I can take, and this is just devastating. I hate that people who aren’t doctors can decide what I am allowed to have. I can’t even get it without the insurance because it is too expensive. I have a $10 co-pay card but those only work if the medication goes through insurance first. If I wanted to pay for this medication out of pocket it would be somewhere in the neighborhood of $8000 a month. Yes really. Again, the system is super broken and perhaps we could vote in ways that make this less easy for the medical complex to do? 

That is just one medication. I still have one medication that had its coupon applied and disaster averted in time for my monthly shipment. Yay! But, I know not to get too excited because the likelihood that it will apply automatically next month without me calling and having it applied manually is about 1000 to 1. The final medication has been refilled by my doctor but the pharmacy seems to think that it was canceled by him. I. GIVE. UP.  I am going to give them a week to figure this out, I am not in danger of not having it until my March shipment. I am hoping that somehow this problem works itself out but I foresee another half hour on the phone getting it fixed. It would be easy to blame the pharmacy, but this has been an issue at almost every pharmacy I have used. 

In addition to all of this, I have been prescribed Wegovy to help me lose weight in preparation for transplant. Do you think the pharmacy can get its hands on any? Do you think my insurance will cover any other type for any reason other than being diabetic? Sure won’t. Am I a literal tenth of a point from being diabetic and kind of hoping my pancreas craps out so I have a chance at getting this medication so I can get a heart? Disgustingly, yes. That is what it has come to, it would be beneficial to me to be diabetic. Insurance does not want to help us prevent things, it wants to help us march ever closer to the grave and play chicken with our plot. 

In the midst of all of this I am feeling pretty gross. Truly not well, mentally, nor physically. I am not super certain why but I have a feeling heart failure is a big part of it. On top of that it feels like I am doing everything I can to put off transplant, get the medication and services I need, literally fight people for what I need to live and every time I get close, the carrot is moved just a little further away. Guys, I am starting to think you can’t get the carrot. It’s really hard to stay motivated to “get better” when it is already so hard. Don’t admit that though, you don’t want anyone to think you don’t WANT a transplant or don’t WANT to get better. Don’t let anyone think you might not be compliant. I want it more than anything, I spend all my time TRYING to comply, but the bureaucracy is crushing, the roadblocks are everywhere, and I just want the damn carrot already. 

Still stable, still strong. Not yet.

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If there is anything I have learned through this whole process it is that I shouldn’t bury the lede, so here it is, after being presented for a second time, my case for heart transplant remains on hold and I have not been listed. I am happy with this decision. I find I am only unhappy in the absence of a decision,  floating out in purgatory not knowing what comes next. This is actually good news in its way, this means that I am stable and strong, and I can keep going without a transplant. Once again my weight plays a large factor in this decision, and I am again not angry about that, though I am a bit annoyed I didn’t have a shot at my new medication for a while before my case was presented. 

About a month ago I was put into a program sponsored by the hospital and the heart failure clinic to get Wegovy at no cost to me because my insurance will not pay for any of the weight loss medications. There are good indications that this medication can help significantly with chronic heart failure but as of yet this would be an “off label” use for the drug, thus the program through the heart failure clinic that is very interested in its potential to help its patients, prolong lives of those waiting for transplants, and possibly eliminated the need all together. (Let’s not dream too big just yet.) All of this is great, however if you have read anything about these medications, especially this one, they are in short supply and I HAVE to get this medication, and it HAS to be through their pharmacy. They have not had any of the lower doses since September. I have been chilling at number 87 on a waiting list for when they get the medication in, however along with today’s news they also were able to bump me up to first priority on the list. 

Hopefully, I will be able to start this new medication soon and it can help jumpstart the weight loss I have been unable to achieve on my own with my limited capacity to exercise. Best case scenario is I lose weight and feel so much better that I can go back to work full time, and I feel better than I do now, well enough to perhaps push the transplant talk back another year, 18 months or two. I am hopeful but not naive, I will control the things I can, my diet and exercise and try to let go of what I can’t, when/if I get the Wegovy. 

It has always been hard to explain this place I am in. My heart functions at about half the capabilities of a sedentary adult, and about a third the capability of a fit adult. On paper it is REALLY bad. In my day to day it isn’t great but it has been such a slow decline over the last 41 years that it isn’t shocking, super scary and sometimes it isn’t even THAT different that what I have known my whole life. It isn’t like I woke up one day and was suddenly unable to go up and down the stairs without feeling faint, that has almost always been the case, it is just more frequent and with fewer stairs now. When people suggest things to do, I used to be able to decide I wanted to do it and power through even though it would mean I would be tired and weak the few days after, now I just have to say no because they are not feasible for me to push through. Most days, I am very tired but I am okay. I live a low key life and sometimes do things I know will cost me, just to prove to myself I still can.

Today in therapy, I was telling my therapist that I think my current point of growth is going to have to be accepting where I am, but like, actually doing it. I know I am at a limited capacity, but I don’t like being the one who has to change a plan or cancel, etc. I have never liked calling myself disabled but more and more that is how my doctors refer to my condition and how I experience life. It is time to start taking the help that is available to me and perhaps ease some of the challenges I face day to day. Apparently I don’t have to just be stubborn and figure out how to do everything myself? Seems fake but I guess I’ll try it. It may be time I start renting mobility aids when the situation calls for it (Omaha Zoo I’m looking at you)  so I can enjoy myself AND still function the next day. Perhaps, I let go of my compulsive need to do my own grocery shopping and let it be delivered 2020 style again. Maybe, just maybe I don’t say “I’m good.” every time a friend asks if I need help with anything, when in reality I just thought of five things I am trying to figure out how to do on my own but know I will struggle with. Anyway, this is all a long winded way of saying I am stable and I am strong, and I will keep doing my part to stay that way, and if that changes, the plan will change too, and I promise, I will tell you.

The Week My Case Was (Supposed To Be) Presented a Second Time

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One week before I got the call that my case for heart transplant would be presented for the second time, I said goodbye to my beloved cat. The end came quickly for us. He was old, it is true, but he was also a complete mad man. That was until he woke up from a nap one afternoon and it seemed like he couldn’t use his back legs. Things only got worse from there. It seemed my sweet boy had a stroke.  I will spare you the details of the decline of my fabulous feline. He deserves to be remembered as the majestic beast he was, but it was easily the most heartbreaking week of my life. I understand now what they mean when they say “soul” pets. Gus was certainly mine. I have loved all of my pets, but there was just more with Gus. He was my friend and confidant. He was my nurse and companion through the biggest changes I have ever gone through mentally and physically. I have never met a cat with so much personality, and while we didn’t speak the same language, he always seemed to know when I needed a cuddle or laugh. I can’t see the future, but knowing what I know now, I think maybe he could at least feel it. You see, one of the biggest things I worried about with the possibility of transplant looming was my buddy Gussy. Gus was extremely bonded to me, and exclusively me. He tolerated other adults who would feed him but he was truly only nice to me. I worried about the amount of time that I would be away from him for transplant and recovery and more than that I worried about how to manage after transplant when it is recommended to not be near cats. I believe he took that worry away from me, and knew this next part of my journey I had to go alone. I will miss my Gussy, my Wussy, my baby, my wayby, Fatness Neverlean, Bubs, Bubbers, Chubs McGee, Auggie, Chonk-a-donk, Triple G, and all the other nonsense names I called him daily. 

The Monday before my heart transplant was presented for the second time I woke up with a blue tongue. If you do a cursory Google search for “blue tongue waking”, you will find that the internet believes that you may be suffering from a congenital heart defect (check), heart failure (check), asthma (check), perhaps acid reflux (also check), or the ingestion of a blue food dye. I could not remember eating anything blue, as I do my best to follow the rules and the third rule of CHD club is no blue food. (The first rule is don’t die, the second rule is no faking heart issues for any reason, even if you hate your PE class). Anyway, I didn’t eat any blue food, so mild panic set in. I took a photo and sent it to the team, not my medical team mind you, my home team, my family, it was 7 a.m. someone had to be awake. My sister must have done the same quick Google I did and concluded I had a congenital heart defect. Shocking. What is a girl to do but check her O2 (it was fine), and then try brushing her teeth. Sure enough, the blue started to come off. I swear I didn’t eat anything blue…but I did have Christmas Nerds, red and green Christmas Nerds, the night before and while they aren’t blue and thus not technically against the rules, it’s the only thing that I can think of that would have caused it. All this, before 8 a.m. on the Monday before my case was presented for a second time. 

On the Tuesday before my heart transplant case was presented for the second time, I said “see you later” to the therapist I have been working with for seven years. Like Birdie said in Hope Floats, “Beginnings are scary, endings are usually sad, but it’s the middle that counts the most. Try to remember that when you find yourself at a new beginning. Just give hope a chance to float up.”  Endings are sad, but notice she didn’t say “bad”. Nothing bad here. For the last seven years I have had the best therapist I likely will ever experience. She was who I needed, when I needed her. I showed up in her office broken and without a toolbox. I am leaving knowing who I am, how I roll, and with a toolbox brimming with ways to not only help myself but effectively help others without sacrificing myself (they’re called boundaries have you heard of them?).  I have grown so much as a person it is time for me to test the wings she helped me build. I hear what you’re thinking…now? Yes. Simple as that. It is time. Sometimes you find yourself at a fork in the road in the middle of a journey and you get to choose a new way forward. Our paths don’t go in the same direction anymore, but how cool is it to be able to look back and see just how far that path has taken you. You know me, you know I am like an adorable fungus you cannot get rid of, a see you later is not a good-bye. You’ve seen the photos of me with my childhood cardiologist, even professionals keep me around, just like you they want to see what comes next. I just as much cannot wait to see what is next for her, she has so many new things happening in her life and practice, she changed my life and I can’t wait to see how she changes others. 

Early in the morning, on the Wednesday before my heart transplant case was presented for the second time, I took a small box containing a tiger tipped vial to my local hospital lab. A sweet woman named Loli drew my blood so it could be sent to Nebraska for antibody testing. This is an important part of the heart transplant process, and a vital piece of matching me with a heart in the future. Loli was so sweet and must have been able to tell that I was nervous about this precious vial arriving in time for Friday. She kept telling me how she did this all the time and how they would process the blood and get it on it’s way. She asked if I had a transplant, and I explained I was hopefully getting one. “Kidney?” she asked. I get that a lot, I think it must be more common for a person my age to need a kidney than a heart. I told her it was a heart and that this was my second try. She told me that she knew she probably shouldn’t say this, but it is Christmas time and miracles happen at Christmas. She will pray for me to be listed. I thanked her, and she told me again that she would make sure that this got sent out quickly. Through this whole process I keep having encounters like this one, my family too. I don’t know what I believe about what happens when we die, but I will tell you this, I am shown almost every day that there are people looking out for me on the other side. 

Later that same morning (the day I am writing this), I got a message from my clinic letting me know that my case won’t be presented this week. Unfortunately, they wouldn’t have my antibody testing back in time to discuss my case. I was crushed. I can handle waiting for a heart, and the unknown of when it will happen. I can handle them saying it isn’t time again, they will know when it is time. What is killing me is being told I am going to be put up for consideration again, and being delayed time and again. They knew they would need this test. They knew how long it takes to get results. They knew where I lived. I was just there doing other tests for this presentation, and they didn’t do it then. They didn’t use overnight mail, they didn’t ask me to come back to do the test there. They just told me they were presenting me, and they were sending a kit to collect this blood. I called on Monday to express concern I didn’t have the kit yet and I was told that it would not be a problem, I could be presented without it and to let them know if I didn’t have it by Wednesday. I received it Tuesday night and went immediately to have it drawn in the morning. I triple checked that it would be sent that morning. To have done what they asked and then be told it wasn’t enough within hours of each other was soul crushing. It is my goal to do everything I am asked by my team. If they had told me I needed to come there for them to draw one vial of blood, I would have. We are talking about the literal rest of my life, we aren’t talking about an annual physical, or an ingrown toenail, we are talking about heart transplant, this is something you drop everything for. I understand WHY they need this test first, but I can understand and still be disappointed in the way things went. Trust can be shaken but not broken, so right now, my trust is a little shaken, but not broken. 

Now I don’t know when I will actually be presented. Next week being so close to Christmas seems unlikely, the next being the week of Christmas seems less likely. I have felt hopeful the last week, that this would be the time, and I would be listed. Things seemed to be working out. I hope they still will. Right now, I am just sad and angry. I am tired of being tired, and I am tired of waiting to know what comes next. 

You should know I am okay. I really am. I am nothing if not resilient, and my mom has come to be with me while I go through all the emotions. She was coming to be with me when I found out if I was listed and she came early when I was crushed to find out everything would be delayed. I am lucky that either way, when I need my people, they show up. This will get sorted out, and sometimes even the best people in the medical complex forget that there are real people and big emotions behind the test results. 

I share all this because this process is not linear, and because of what is on the line it is incredibly emotional. I share this because you are someone close to me and I want you to know what is on my mind when I seem like I am a little less cheery than usual. It is important to share this because, you might be going through something like this, you might know someone (me) who is or will be, it is important to know that it isn’t a plot against you or me when things don’t flow neatly from point A to B. If you are one of my people thank you for your support and love through this, I continue to be amazed and humbled by the amount of kindness and love I have been shown. If you are on your own journey, I wish you health and ease as you put one foot in front of the other.