SNIPPETS OF MY EVERYDAY ADVENTURES

Hey cool people.

Travel nursing was a leap of faith sparked by an itch to throw myself out of my comfort zone. Milwaukee, WI, clocking in at over a thousand miles from home, seemed to fit the bill. What can I say? It’s hard for me to half-ass things;)

This is such a fun adventure era of my life I’m living, and I don’t want to forget it–hence continuing this blog. Writing on here keeps me more accountable to reflect–I’ve never been a very good at actual diary-writing. So whether it’s two, ten, or a hundred of y’all out there that follow my story, thanks for witnessing my journey.

This first assignment certainly had some divine intervention involved. At each turn, I found myself being spoiled with new experiences and faces and growth opportunities. Here’s a snippet of life lately, through my eyes.

Clocked in:

My time as an nurse here ended up being a lovely happy-medium between new and old–which served me well as a new traveler. Children’s Wisconsin took me in with open, welcoming Midwest arms. I lucked out with the same charting system from Colorado, and some similar hospital equipment, making the initial learning curve less steep.

I was hired onto the neuroscience unit at Children’s, which was a bit different than my med-surg background, but nevertheless, still sweet kiddos and families. Fortunately, with the combination of my experience with patients with seizures on my home unit and my sibling experience with Grace’s seizures for the past ten-ish years, I didn’t feel completely out of my element. I had the opportunity to care for a few patients who had the same brain surgery Grace had in 2016, which was a fascinating privilege.

I was hired on for dayshift but within a few weeks was asked to rotate, and then switch fully to nightshift–which wasn’t my first choice, but which went better for me than it had as a new grad nurse. Still, the zombie-esque, never-fully-rested fog was an adjustment. Just another instance of becoming more pliable/adaptable to my circumstances though.

The second half of my contract, I spent a lot of shifts floating, or double-floating (spending the first four hours on one unit, then the next eight on a different unit) all over the hospital. I was grateful I had the first bit of time consistently on my home unit to acquaint myself with the hospital before floating became my routine. And I was especially grateful I started my nursing career on a general unit which prepared me well to adapt to the other units.

Clocked out:

Outside of work proved to be just a chock-full of fantastic folks. I found the most down-to-earth, quickly relatable roommates. My expectations of just a room in a house found on Furnished Finder were far exceeded– right from the very first weekend when they offered to give me a driving tour of Milwaukee. We spent hours on the couch playing board games, getting invested in Abbott Elementary, and discussing topics ranging from the rollercoaster of dating in your 20s-30s to hilarious anecdotes about the kids we interact with in our respective jobs.

Knowing in the back of my head that I wouldn’t be in this city for very long made me a much more frequent explorer. With a thoughtful list curated by my dear dance friend, and former Milwaukee inhabitant, Serena Hendrickson as a starting point, I tried a variety of restaurants with several truly lovely connections I made.

I went out with a very kind Wisconsinite (with a very sweet pup) for much of the four months I was there. As a gal who has especially minimal dating experience, this was a very new element in the mix of this adventure. Though we went our separate ways, I enjoyed our time together, I respect and appreciate who he is as a person, I and feel like I learned a lot about myself in that dating process. (Y’all sense a theme here? I’m a student of my surroundings now).

It’s wild how in this expansive universe, our world can still be so small. I serendipitously had two friends from different eras of my life that welcomed me to Wisconsin with open arms–Amelia from my Mayo Clinic Summer III program back in 2018, and Zoe from the Free Spirit Journalism Conference I attended back in 2015. I had gone into this contract not expecting to know anyone, and this was a helpful and delightful addition to my social life. Zoe in particular became a fast friend–adding to my list of “close-yet-far” friends who live far from me in proximity, but remain close confidantes.

A few other adventures– I tried out the ski scene at Wilmot “Mountain” in northern Illinois, which was an *experience* and made me feel like the most spoiled Colorado brat alive. Not gonna lie though, I didn’t mind the ego boost to be able to confidently ski black runs there;). I also took a very quick day trip to Chicago with a fellow travel nurse– complete with a visit to The Bean, seeing the city from a skyscraper, and thoroughly enjoying deep dish pizza. And through my four months, I fell in love with a hot yoga studio that was a fantastic re-centering space.

Trying out this travel nurse thing proved to be an incredible motivator for me to seize the day– to “carpe diem” as you will (can that be a verb of its own?).

My verdict:

So would I ever move to Milwaukee? I don’t know–I certainly missed, and was excited to see, the mountains again upon my return to Colorado. But Lake Michigan was impressive–several walks along the lakefront, and I was still blown away by this ocean-looking body of water. And the city of Milwaukee was very cool–though I wasn’t living downtown, I frequently popped down there and thought it was the perfect size city if I were to ever live in a downtown urban area.

Alas, I am a firm believer even with my love for the outdoors and whatever is available in the landscape around me, that its the people–the company–that makes or breaks a place. I think I was meant to cross paths with each person I connected with in Milwaukee–I learned from others, and learned about myself. That was the name of the game, and I can’t wait for the next bunch of people I will get to meet at my next placement.

And where might that be, you may ask? Well, I write this from the good ol’ 303, enjoying some family time before I begin my next roadtrip. It’s weird but mostly nice having all five Koontz’s under the same roof again for a few weeks. At the start of June, my mom will be my travel companion to roadtrip, this time westward, up to Washington state.

I’ll be working for the summer as an RN at Camp Korey, a camp for kids with medical needs about an hour north of Seattle. Ya girl is STOKED to return to the goofy, joyful camp life. It will be a gift to medically support these kids to have the time of their lives each week. And returning to my hippy/granola roots? With the added bonus of this being a mostly daylight hour gig? Say no more.

I’ll keep y’all posted on the smashing success I have no doubt this PNW summer will be.

Thanks for being here, buddies.

Until next time–

OK

Hiya friends–a belated happy new year. 2022 was quite a rollercoaster. And what was my natural response after getting off this years’ wild ride? Get in line for the next adrenaline rush. 

Today I’m setting out on a new adventure. I’m anxiously, giddily excited to start travel nursing and embrace the nomad-esque lifestyle. I’ll be headed to Milwaukee, WI for my first travel contract to work at Children’s Wisconsin. 

On my way to Milwaukee, my college best friend and her boyfriend graciously hosted me for a delightful 36-hour pitstop in Omaha. Returning to some old staples and frequented spots on Creighton’s campus and around the city, was a delightful walk down memory lane. In fact, it served as an extension of a deep nostalgia spiral I’ve been whirling in over the past few weeks, reflecting on the chapter I just finished, as I prep for the next. 

With all the liver happenings of this past year especially, that took the spotlight. And believe me, I’m not done talking about that.

But so many other smaller awesome stories made up this past chapter, and it’s honestly my Achille’s heel that I cannot emotionally turn the page in times of transition without some sort of recognizing of the “good that was”. 

Colorado Springs, you were so good to me. I grew so much in your city limits. 

I started my career, and grew in my career. Children’s Colorado, Colorado Springs, Med-Surg, was a dream job. I worked with so many passionate people– people who wore teamwork like a glove, who cared deeply, who taught me and pushed me to reach a higher potential. I got to learn, and eventually, I got to teach. It didn’t take long for my unit, but truly, the hospital as a whole, to feel like home, with faces that became familiar. When I left, to say it was a bittersweet last day would be an understatement–but gratitude was the overwhelmingly strongest emotion I had.

I dabbled in a wide variety of experiences. I did community yoga classes. I went through a Grandma-period with lots of embroidering and Great British Bakeoff. I did the Manitou Incline three times (questioning my sanity with every step). I volunteered as a Zoom online reading tutor for a 3rd grader. I spent many many hours in coffee shops. I went on lots of hikes, some in solitude, and some in company. I volunteered in the visitor center at one of the local parks for a bit. I found refuge in Tuesday morning contemporary dance classes at a local dance studio. I tried out the dating scene, which gave me great content if I ever decide to try standup comedy. I checked off my first two fourteeners. I tried out indoor rock climbing and bouldering. I clocked many a ski days. And I found and frequented my favorite walking spots. 

I went on lots of hikes, some in solitude, and some in company. 

And truly, the greatest gifts in The Springs were the people. I lived with and met some of the kindest folks. I got really lucky, especially moving to a new city in the midst of the pandemic, that the universe still provided me with community. I’ve tried to sum up the friends I’ve gotten to know and appreciate probably twenty times as I write this, and I just can’t seem to do them justice. They are wonderful, adventurous, down-to-earth, eclectic, talented, good-time-having humans, and I was so lucky to spend game nights and brunch dates and coffee hangs and unplanned long kitchen talks with each of them. It’s just been a blessing to “figure things out” with other “figure-outers”, with lots of laughs to remind ourselves to take ourselves less seriously. 

This place, these people, these experiences molded me. And I think The Springs and all it brought to my life prepared me for this next step.

I’ll leave y’all with a play-on-words for my Colorado Springs home. We’ll see if the next place I call home will get a poem too–but they’ll have to earn it;)

As always, thanks for being here and reading this “Accountability Diary” commemorating the goodness I’m surrounded by.

Till next time.

-OK

Friends!! I am so excited to share the next unfolding in this liver journey. This beautiful little warrior is Madelyn, my liver sliver recipient. With her family’s permission, I wanted to share some of her journey with all of you, knowing that you, my circle, were holding her in the same positive energy and prayers as you were surrounding me and my family with through this process. 

the mystery…

I became a confirmed donor without knowing anything about my recipient. A week before our surgeries, my surgeon was gracious enough to share that my recipient was a baby girl—a fact that made both my mom and I instantly choke up. I also learned at that she was around 7kg, which to my nursing brain was also extra intel.

After my surgery, my first question was “how’s she doing?”, and at that point she was still in the operating room. The next day, they shared that her surgery was successful, and through the rest of my hospital stay and my follow ups, I would get a little sentence here and there from my nurse coordinator that my recipient was “recovering well”, “healing nicely”, and eventually, that “she got rid of all her tubes and is at home living her best life with her new liver”. 

With hospital policies and respect for both sides of the donation equation, we had to wait until 4-6 weeks post-op for any communication, so at my six-week appointment, I gave my nurse coordinator two cards–one I had written prior to our surgeries, and one written soon after–to send to my recipient and her parents. I shared a bit about myself, that I was a pediatric nurse, I loved the outdoors, and I was blessed to be surrounded by lots of wonderful people in my life. 

Our family knows first-hand the turmoil of a recovery following a transplant—and it’s not a surprise that the recovery is longer for recipients than donors. The identity of my liver recipient was a mystery I was fine with remaining a cold case. Of course I hoped to connect someday with her and her family, but I had often up to this point convinced myself I was fine with this little one being a mystery I prayed for and thought of with ambiguity forever. 

Then in late September, I got a call from Jaime, my nurse coordinator. My recipient’s family had written!! I could pick up the letter from UCHealth on my way up to Westminster to visit my family. 

Before I share just how wonderful this letter was, here’s a much shorter, alternative version of this connection, written in prose. What can I say, I have to keep up my street creds;).

…and the reveal.

I didn’t open the letter the moment I picked it up from UCHealth. I knew I wanted that moment to be special. Obviously, she was “real” before this letter. But opening that envelope was surreal, hearing from the family of a little one who has a piece of me inside her forever. 

Within the letter, Karissa, her mom, shared how Madelyn came into this world appearing completely healthy, but how quickly within her first few weeks of life, she was diagnosed with biliary atresia—her bile ducts were scarred and/or blocked and not draining bile out of her liver appropriately. According to The National Institute for Health, 1 in 12,000 babies in the United States are born with this life-threatening condition. 

She had a Kasai surgery at six weeks old, a surgery that can slow the progression of liver damage for babies born with biliary atresia, but because her liver ducts were so small, the surgeon wasn’t sure the surgery was successful. Her journey from there involved multiple several-week long hospitalizations to aid her in nutrition. She had to have NG (nasogastric) feeds and eventually, go on TPN (IV nutrition) because she was so malnourished. Her parents had to learn how to put NG tubes down her nose, and eventually, how to start her TPN infusions through her central line. Talk about superhero parents. 

Reading this as an RN that puts NG tubes down kids and manages kids on TPN on a regular basis, I can only empathize how difficult this was for these amazing parents to do for their own baby. It’s different when it’s your own child.

This beautiful family lives in Arizona—Maddy’s mom had done a ton of research trying to find hospitals around the nation with great liver transplant outcomes and short waiting lists, ultimately coming across our Children’s Hospital of Colorado (CHCO) team. Her advocacy and researching what would be best for Maddy sounded veryyyy familiar–sounds like another very special mom who has 20 years of practice doing the same thing for another very special liver recipient I know.

Maddy underwent her evaluation with the CHCO team a few months before we found out that I was a match for her. This means, from my rough estimates, that her liver journey and Grace’s liver journey were happening in a pretty parallel timeline, up until March 21 when Maddy and I had our surgeries. It was right about a year ago, in November 2021, that I took the living donor survey and began seriously looking into living liver donation. 

It’s clear in hindsight how the stars were so clearly aligned, and God certainly knew exactly how this was all going to play out, well in advance. And boy, what a difference a year makes. We’ve seen four lives change—two donors, and two recipients. 

So now a bit more about this beautiful girl I’m forever connected to.

Madelyn’s family calls her Maddy Mae (I know—ADORABLE). Miss Maddy Mae is 17 months old and is the third of three sisters (just like the Koontz family). The letter the wrote was enclosed in a card that had two adorable illustrations from her two older sisters, too. Be still my heart.

When they wrote, Maddy was just starting to walk. Her vocabulary at the time of that letter included “hi, hello, mom, dad, uh oh, banana, yellow, and oh no”. She sounds like she very much fits the youngest child stereotype–stealing the show. Her mom says she will shake her head “no” just to be funny and keeps them laughing every day.

She has “grown and flourished” since her transplant.

As I’ve read that letter a hundred times over, the fact that one of her first words is “banana” stuck in my silly metaphorical writer brain. I’ve been really stuck on this race/running metaphor during my creative processing of the donation experience. Bananas are often a go-to replenishing snack after runners finish a long race or marathon (or so I’ve heard, as a very much non-runner over here). The electrolyte/carbohydrate replenishment in a banana helps with muscle recovery and refueling the body. Seemingly, after a very tough run, Maddy’s little liver was out of steam. It makes me so happy that my little liver sliver could be her “banana”, her replenishment, so she could get out there, run a thousand races to come, and hopefully…get ready to cringe because this is a pun I can’t pass up…have a super *fruitful* life ;). 

So now my little liver sliver has found its new home in little Maddy Mae. I hope someday I may be able to meet her and her beautiful family in-person but for now, photos and texts are truly a treasure. And as always… if our story peaks your interest in living donation, please reach out—you could be someone’s chance at a new life too. Be a banana 😉

And to Miss Maddy Mae: You are my hero. This giving has been a two-way street, from the very beginning. I was and am so honored to have been your liver donor and I can’t wait to hear about your amazing life. And your smile is *literal sunshine*.

Thanks for reading and sharing in my joy!

-OK

Hey buddies. Apologies for getting behind on a new Grace update–and thank you to those of you who have asked how she’s doing. Certainly we’re in a much different, and better, place than at the end of June.

I recently saw a metaphor that had perspective that felt fitting with Grace’s current health status. The author wrote about plateaus and questioned why we have a negative societal connotation tied to them. Plateaus are tied to stagnancy, settling, a lack of progress/momentum forward. The author offered this alternative perspective: plateaus can still be majestic without being a peak summited– there’s something beautiful about being on stable, higher ground, still able to take in the valleys or fields below.

Granted, I’m pretty sure I saw it on TikTok, so take that for what it is. But honestly, what a beautiful sentiment, right?

Health-wise, we’ve hit a plateau of sorts with Grace. She is stable, she’s been out of the hospital through August, and she’s improving.

 Since her final discharge from the hospital, she has been dealing with heart/circulation issues–a new system to throw in the mix for Grace. Sometimes transplanted livers as they grow can put more pressure on the vein returning blood from the liver to the heart. And of course, if it’s a “sometimes thing”, it’s a “Grace thing”. She’s got a thin blood clot and a narrowing in her inferior vena cava–both of which are putting more stress on her heart and leading to lots of swelling in her feet as her venous return isn’t working as well. Essentially, her poor little feet look like a much older person’s with heart failure.

But she doesn’t have heart failure. The location of the clot and narrowing is too risky to intervene quite yet, so she’s on some meds to thin out that clot and we’ll keep monitoring. It’s tough to see that her recovery is appearing lengthened as it’s really painful for her to walk or stand for too long.

That being said–again, things to be grateful for: Grace is HOME, she’s getting integrated back into her day program classes and is getting stoked for a performance coming up in October, and her new liver is doing fabulous now. Overtime, the other things will resolve, and we’re grateful for any normalcy–even if it’s coming slower than previously anticipated.

Up until earlier this week, she had gone SEVEN weeks without a seizure—the longest honeymoon haitus we’ve had since her epilepsy diagnosis years ago. She has seemed more alert, more engaged—it’s incredible. We hope and pray this alertness stays as we navigate with her healthcare team if her meds need to be adjusted again.

She’s still getting two Lovenox blood-thinning shots a day, and still on a cocktail of meds for immune suppression. She’s always been on a good handful of meds but now, she’s got a whole lazy Susan dedicated to those pill bottles.

Yesterday she tripped on a lip in the sidewalk and got a gnarly little cut on her eyebrow–a frequented gash spot that she’s nicked with her glasses from other prior seizure falls. With her on two blood-thinning meds, this fall was a bit extra alarming, but fortunately it only required some surgical glue at the doctor’s office.

She was still not going to let that hiccup keep her from her rehearsal at her day program though. The picture below says what we already know. She’s a rockstar.

For a third in this running metaphor poem series:

For context, that’s a metaphorical account of Grace’s wild journey, including her two life-saving transplants: bone marrow back in 2003, and now, liver in 2022. How blessed are we.

Thank you again for following and supporting, amigos.

-OK

Hiya buddies.

I’ll do the spoiler alert first, the cut to the chase, the glass-half-full news first, because our family strives for and relies on optimistic faith in our day-to-day.

After 19 days, GRACE GOT OUT OF THE HOSPITAL. We’re elated. It was a nice touch for it to fall on Father’s Day too–a lovely present.

But then, 72 hours after coming home, Grace woke up glowing…but not in a fake Instagram influencer way. Jaundiced. She was readmitted to the hospital, and is still there.

My intent was to publish this next update when everything “calmed down”, and was wrapped up in a pretty little box. But as much as this author is rooted in optimism and perfectionism, I also want to be authentic in sharing what this road has really looked like.

So here you have it: my muddy, pot-holed-ridden trail of thoughts from this journey so far.

June 1. There was a lot of anxiety leading up to this day but the day itself we were kept well in the loop by her medical team. 

Belle and I got to FaceTime Grace briefly the morning before surgery, and it was a little tough to see her nervous. It’s a blessing and curse, being so familiar with the hospital setting that she didn’t show these feelings of fear until more recent years, as she’s gotten older and more aware of the “big deal” element to these surgeries. 

Belle and I met my parents up at the hospital mid-morning and we chatted in the hallway for a bit before we went outside to watch for the ever-anticipated cooler. Coolest thing ever. How often is it that you get to see a red cooler with a miracle inside? It was awesome. You would’ve thought we were meeting a celebrity by the way four Koontz iPhones swarmed paparazzi-style towards this thing. In the back of my mind, I thought how special it was to be able to witness this moment, and wondered if my baby liver recipient’s parents waited outside the very same emergency room just a few months ago, anticipating a different liver sliver. 

After a little Panera lunch, we were back to the waiting area, close by to make sure we didn’t miss her surgeon coming out for an update. To pass the time, we played a few games of Chinese Checkers. There was a lot of time to pass. 

The surgeon came out with the reassuring news that she was doing great, they had attached the blood vessels and were letting her “sit”– that is, they were allowing for a surgical “downtime” to ensure her new liver was stable and taking to reperfusion nicely. Medicine is crazy, you guys. With this update, our surgeon also had company–she was accompanied by my liver surgeons’ daughter who was shadowing, and a surgical fellow who had been present during my surgery back in the spring. The liver transplant world in Denver, CO is small, y’all. Who knew? More reminders of interconnectedness. 

The day after surgery, Grace was knocking it outta the park. She got up to the chair, was tired, but managed some smiles and some short chats with us. Her ICU nurse told us he expected she’d probably transfer out of the ICU the following day to the regular medical-surgical unit.

The next day came, but she did not leave the ICU. In fact, she didn’t leave the ICU until six days later.

Trembling hands and a shaky voice gave way into bouts of confusion and unfocused eyes which progressed into a catatonic-like mental state. This was all related to a toxic level of her new anti-rejection med, which had become toxic because Grace also has chronic kidney disease, so her kidneys couldn’t keep up with metabolizing and excreting this medication. She added an AKI, an acute kidney injury, to her laundry list of medical complications she’s lived through.

I was working that weekend, and getting text updates through the day and phone calls.

“It’s like she’s looking without seeing.”

“I just want our sassy Grace back.”

“I miss her.”

It was disheartening and downright scary to hear these reports, I can only imagine by multiplying that several times over just how terrifying it was to be a witness in that ICU room through that weekend.

But, in true Grace Fashion, she pulled through. After 48 hours of this neuro-depressed daze, she was able to tell my mom “te quiero”–Spanish for “I love you”. Only Grace would come out of all that retaining phrases in not one, but two languages.

On her 21st birthday, June 8th, one of the best presents was getting Grace transferred out of the PICU and up to the regular floor. What a queen. It would still be 10 more days and two more procedures later before she would be discharged home. She had bile leaks requiring two stents to be placed by a scope under anesthesia.

My parents are legitimate superhuman. Through the whole stay they alternated who spent the night at the hospital, essentially taking 36hr shifts with 12hrs off. A brutal sequence. Grace progressively was OVER being in the hospital. After nearly three weeks, even room service loses its shine.

Some positives though–the Children’s team made Grace’s 21st birthday in the hospital as special as possible. They had a cute poster that the staff signed, we brought in a few balloons and decorations, and she got a surprise visit from Galaxy, the therapy dog. All things in perspective, the big present of the decade was already gifted–that beautiful functioning organ–additional celebrations are sure to follow through this year.

There were some additional complications. She has had bile leaks leading to not one, not two, but three stents being placed under anesthesia. She went home on Father’s Day, but had to come back for the third stent to be placed after she woke up jaundiced. This shorter secondary hospitalization has included more neurological changes, on a lesser scale, but nevertheless concerning.

It’s been adjustments, further imaging, and waiting. Lots of waiting. Waiting for answers, waiting for lab results, waiting for specialists to talk to specialists. Waiting for Grace to catch a break.

We continue to be grateful for how much more difficult this process could be, but I’ll tell ya, sometimes hope is exhausting. It is necessary, yet not effortless, exercise required to maintain our spiritual/emotional fitness.

This is proving itself to be a marathon, not a sprint. A run she didn’t sign up for, but one made much easier with a road lined with support, so thanks again.

Our fingers and toes are crossed for Grace to get to go home, and stay home, soon. Thanks for following, for your continued thoughts and prayers, and for your love for our family.

As Grace would want to share– muchas gracias, amigos.

-OK

Holy moly. It’s been a wild two weeks, buddies. Grace got her new liver on June 1. She’s had quite a rollercoaster of a recovery with complications related to her medical complexity that were difficult and overwhelming to witness and process. She’s doing much better now, and in a later blog post I’ll take you through that novel.

But first, I want to introduce you to our donor.

Friends, meet Katie Kinnard. This incredible, generous, selfless gal decided to give a piece of herself, become a live living liver donor, and now she’s changed our lives forever. And she decided this at 20 years old.

Grace and Katie went to elementary school together and spent two years as little Brownie Girl Scouts too. We’ve known her family for years. Her mom helped set up meal trains for our family when Grace was going through cancer treatment 20 years ago. They went to different high schools but I guess this counts as a pretty remarkable reconnection;). Below was when they were in 3rd grade, and then graduating high school seniors. Guess there was something in the water at Semper Elementary;).

When we first put out our story on social media after they determined that I couldn’t be Grace’s donor, Katie was one of several generous folks in our circle who reached out to share their interest. It was a very different “slide into the DMs” scenario. She shared that she was Type O, fully vaxxed, and was interested in being considered. She asked if her living out of state for college would make a difference, and I shared that she just needed to be able to stay in the state for a month or so for recovery.

She was one of the earliest people to wish me good luck on the morning of my donation. Likely she had already been working through the process at that point, unbeknownst to us… until May 2 when our nurse coordinator told us the joyful news that Katie had been approved.

After that, in the weeks leading up to June 1, I enjoyed getting to text with Katie, answer a few questions about the hospital stay and what to expect, and share a few stories from my experience. It’s been so fun to hear bits and pieces of her experience and share how Grace has been doing. Those little milestones–getting the catheter removed, getting to eat solid food, getting to go home to continue recovering–were such awesome steps to hear about in live-time, and were welcome good news while Grace was in the ICU with some challenging complications post-op.

Earlier this week, Katie and her mom visited Grace after her first followup visit (cue the photo at the start of this post). I so wish I could’ve been there, but my parents said it was very emotional–how do you begin to thank someone for such a selfless gift?!

Oh and that little bear in Grace’s arms? Yep that’s a little red liver with a “K” on it–I’m not crying, you’re crying<3. Also what on earth? A gift after a life-saving gift? Icing on the cake that was already too sweet to properly show gratitude for.

Lastly, surprise, surprise– in the week before Grace’s surgery as I was working through my anxieties and feelings, I turned to writing again. I guess this is a continuation(?) of this poem I wrote prior to my donation.

Truly, I use the word relay because there has been such a team of generous souls who came forward in the past several months wanting to give to Grace. While Grace only needed one liver, this story would be remiss without acknowledging that our family still sees and deeply feels such gratitude for the sacrifice many others (we know of at least seven!) had offered, who had gone varied distances through the process to look into donating to Grace.

Katie was our answered prayer for Grace, but if her donation, my donation, and/or Grace’s received gift has struck a chord in you–man, I know I’m biased, but I sure do recommend it. Living donation has changed me forever. This is such a HUGE part of our story now. For more information: https://www.uchealth.org/services/transplant-services/living-donation/ .

Thank you Katie! In awe of your strength and generosity. You are incredible. Keep crushing recovery;). Oh and happy 21st birthday today! The irony of your liver donation and year of sobriety falling in this same milestone year is not unnoticed.

And for the rest of y’all–thanks again for reading and following this journey!

Talk soon.

-OK

I’m a happy cryer. Honestly it’s pretty rare that I cry otherwise (is that emotion suppression? Probably. But I digress.) 87.5% of my happy tears happen while watching some beautifully crafted (typically animated) movies. And ah, that’s some sweet release right there. But every now and then, real life brings out that lump in my throat and that bundle of emotions unravels real quick. That’s been happening a bit more recently, as you smart people can guess, based on my spoiler-alert title.

“Wow.” Forwards and backwards, it’s the same. I think Mom and I said that little, insufficient word a hundred times in the hours after that appointment. 

“We have an approved donor for Grace.” 

That appointment was on May 2. I can’t tell you how many times I’ve started, and backspaced, and stared at this page over the past month trying to piece together words for this experience. It’s overwhelmingly unfathomable.

The way this all panned out is unique in the transplant world, from what my nurse coordinator told me–it’s very atypical for a potential donor who can’t donate to their originally intended recipient, to donate to someone else before their intended recipient/loved one receives their organ. Because of this, during my follow up visits, beyond asking about my baby liver sister’s progress, we’ve also been asking my nurse if she had any updates on the donor side of things for Grace.

First, baby is doing wonderful as of May 2–they told us she was home, living her best life, and was feeding well and is now “tube-free”. Incredible. Our hearts are so happy. Oh and I’m back down to the Springs, returned to light-duty work, doing a lot of yoga, and slowly am hoping to get back to taking care of patients soon.

But back to the next chapter we’ve all been waiting, praying for. Grace’s match is official.

Her donor’s family has asked that we keep them anonymous at this time, but I will share that this incredible, selfless human being is someone who has known Grace for a very long time. They have shared just how excited they are to be able to donate to her. I’ve been able to be in contact with Grace’s donor, sharing what I can from my experience, which has been awesome.

And I’ve gotta tell y’all–even though our rationales, our verbiage for explaining why we wanted to be living liver donors is very similar, it is WILD to hear those words out of another person’s mouth. The generosity in this human’s heart is out of this WORLD.

Grace will be undergoing liver transplant this Wednesday, June 1. Yeah, like three days from now. I would’ve gotten the word out sooner but like I mentioned above–describing our gratitude is legitimately impossible.

Thoughts/prayers/good vibes are so appreciated as we gear up for the wild ride we’ve got coming. We’ve been told to anticipate Grace will be in the ICU for a few days, and in the hospital for 10-14 days. Her complex medical situation means there’s even more than normal to be monitoring: her seizure threshold, her kidney function, and obviously the very real, very careful monitoring of her soon-to-be new liver function and the balance of anti-rejection medications.

After such a heart-wrenching week full of so much communal grief, anger, and confusion, I am even more cognizant of how blessed we are to have this hope-filled, joyful day coming for Grace and our family. We hold this dichotomy of two circumstances that are difficult to put into words, and to be on the side of the equation that is full of hope instead of inconceivable, senseless, grief is a gift we do not take for granted.

Our story here is evidence that there are people making a difference, caring about and prioritizing the lives of others in a big way. Hopefully our nation will follow suit.

Thanks for being here, amigos. I’ll keep y’all posted.

-OK

Hello from the other side, friends:) 

This chopped liver is back. (Yes I will embrace stupid pun for the rest of my life).

We’re one week out from the climactic chapter of my liver sliver’s journey. It’s been a blur, a slow-paced fog coming out of anesthesia, drifting in and out of a bit of the Dilaudid daze at the start there, and the fact that my most time-consuming activity to date is napping. 

In case the grapevine didn’t quite get to you, donation/transplant went well! Surgery went smooth, no surprises in the OR, and they even honored my geek request for a photo of my liver, and the removed liver sliver, which I can show to anyone interested (if you’re less than interested in looking at my open abdominal cavity, no hard feelings;).) I think it’s pretty neat though;).

The next few days after surgery were a revolving door of different nurses, CNAs, and members of the surgical team following up with me. It was an overwhelmingly positive experience, albeit weird being on the other side of the hospital bed.

This was a true lesson in empathy for my patients. A few things I will never take for will never see the same again in my nursing career after being a patient: 

• Those green mouth swabs hit DIFFERENT, especially when I was NPO for the first 12 hours or so after surgery.
• Lovenox shots (“blood clot shots”) are ROUGH, man. They burn, and my arms still look I got beat up, they bruised up real good. Still, rather that than a DVT or stroke. But ouch.
• The heat packs that saved my back (and my sanity). 
• The call light is a literal essential pieces of equipment. On my last night, the call light dropped on the floor and I literally had no way of getting to it. Fortunately it was only a little longer until my next set of vital signs and meds were due but I was laying there feeling incredibly helpless. 
• The instant mood boost of a shower–wowza. Like night and day. Seriously.

Each day following, I graduated away from more lines/tubes, got my foley catheter out the morning after surgery, my central line pulled from my neck the next day, and my JP-drain the final day before discharge. Each got me closer to feeling like myself, and was getting my body closer and closer to doing the legwork of healing on its own.

I won’t sugarcoat it completely–the recovery hasn’t all been smiles–the pain goes up and down, and moves around it seems like on the daily. One day it’s my ribs that are bothering me, another, it’s my midline incision, another, it’s my back that feels like I deadlifted for hours. A PA on my team we had called over the weekend for back pain that wasn’t letting up explained that since my abdominal muscles were cut/can’t work right yet, my back muscles are taking the full workload to keep me upright as I move. So the grandma-back ache makes sense.

I had hiccups for the first day after surgery, and I sneezed for the first time last night–neither are pleasant experiences after abdominal surgery haha. And beyond that, it’s no secret that narcotics and being more sedentary are a perfect recipe to block up your gut…delightful.

They said I would become acutely in-tune to my body…and they were right. It’s been an adjustment going from skiing, dancing, yogaing, climbing, hiking, and Zumba-ing on the reg to stopping every few steps as I shuffled down the hospital hallway. Yet we’re making progress. And I’m ever more grateful for my body’s adjustment to this reset.

But regardless, these spikes are intermittent/ I’m not in constant pain, and when I’m groaning as I side-roll out of bed, I think of my little liver sister and how much more discomfort she must be in after a more invasive operation, on her small body. This short-lived discomfort on my end means she hopefully has a chance at a full beautiful life. Totally worth it. Drop in the bucket.

This has been such a humbling experience. As someone who lives to give, receiving feels super awkward to me–it’s difficult asking for and accepting help, as well as taking in the outpour of warm thoughts and well wishes. One of my favorite nurse and life-mentors gave me advice the week before surgery encouraging me to recognize it’s actually a gift to graciously receive.

This may have started as a gift of life, but it’s giving way into a season of receiving. It is absolutely a two-way street. I felt an overwhelming sense of peace on Monday morning as we drove to the hospital for surgery–a peace I know was directly connected to the prayers, good thoughts, and good energy lifting me, and my baby recipient, up.

My days consist of a few slow strolls around the cul de sac, meals with the fam, and sleeping. And some reflections like these, of course. It’s simple, but there’s a lot to appreciate.

A (non-alcoholic) cheers to living donation! Cheers to science! Cheers to putting more goodness into this broken, rough world we’re living in.

Thanks buddies–

-OK

There’s been a whole heck of a lot of processing and preparing over the last week. And now, we’re at the final stretch. (Oh and if you’re new and kind of lost…long-story-short is I’m donating part of my liver on Monday. The long story is in the afore-published two-parter at these two links: “So my sister needs a liver transplant…” and “Plot twist…”.)

This was my catharsis this morning, condensing this journey to this point into fewer words.

One more humble ask for good energy/prayers/good juju/etc for smooth sailing and a successful transplant for my recipient. We recently learned this liver sliver is going to an infant, a baby girl with a whole beautiful life ahead of her. It’ll be a new start for all of us, starting this Monday.

So grateful to be surrounded by so much love.

I’ll touch base sometime after my magic nap;)

-OK

Hey hi hello again:)

Happy Valentine’s Day. And, fun fact, Happy National Donor Day. How fitting, a day raising awareness for the gift of life also coincides with the day we celebrate LOVE.

Last week, I shared how my journey to be Grace’s liver donor had come to a halt. What I didn’t share is that halt actually morphed into a detour…which I’ll get to;)

But first…a thank you.

Can I just take a second to understatedly express how much gratitude I’ve been filled to the brim with this week?? It is UNREAL how generous and genuine the circle around me is. This has been honestly kind of a lonely, intimate hike of a past few months for our family, and even though it’s vulnerable to plop this all out into the open, the support y’all have shared has meant the world.

Some of you have reached out individually to me, some of you have shared this post on social media, and some of you have sent the donation link personally to your circle. From that post alone, with your help, over 1,400 people thus far have read our story. Thank you, and I humbly thank you in advance for continuing to share our story to help us find Grace a new liver. No words will do it justice but y’all know I will DIE TRYING to express my humble thanks.

So ’bout this detour…

So really, the dealio is this. Call it what works for your interpretation needs–a calling from God, a gut feeling, an itch I couldn’t scratch, I had felt that being a liver donor was part of My Plan.

It hurt, and still hurts, that I couldn’t donate to Grace–ultimately because my left-lateral segment of my liver was too small for her. (My left/right lobes had already been ruled out because my blood vessel anatomy in my liver isn’t optimal for those types of donation).

I had felt so affirmed in my decision, so at peace. I could’ve been disqualified as a candidate so much earlier in the process–there are so many variables throughout their thorough, holistic dive into your overall health and the state of your organ. How had I made it this far only for this to not work? I was like “Hello…Jesus? Thought we were set here…what the heck, dude?” (yup, my prayers *are* that eloquent.)

Once the initial disappointment wore off that I couldn’t be Grace’s donor, I began to think about the fact that there are other families in our exact same shoes, waiting, stressing, worrying about finding an organ for their loved one, and many are in far more dire situations closer to organ failure. In fact, according to organdonation.gov, over 106,000 men, women, and children are currently on the national transplant wait list in the United States, waiting for an organ.

I decided to open the conversation with my nurse coordinator if I could possibly match someone else, a smaller recipient. I knew that with me out of the running for Grace, we’d be looking for someone unrelated to make this generous sacrifice for her. Could I possibly do that for someone else?

Spoiler alert–i’M donating to someone else now.

In five weeks, I’ll be donating that small corner of my liver to a kiddo here in Denver. I don’t know anything about them except that I’m honored that I get to bring an end to their waiting game. I feel so privileged to be able to provide to this kiddo what I hope a selfless, beautiful person will feel able to do for my sister. In the middle of all the confusing worry-filled waiting for Grace, I am so happy to moving forward in a hopeful direction. That sense of peace and enthusiasm returned within me since I recommitted to this journey just for a different recipient.

One more shameless plug–if my story intrigues you any further about living donation, please click this link to learn more. https://www.uchealth.org/services/transplant-services/living-donation/. On the right side of the page is a link to fill out the survey if interested in potentially becoming a donor candidate. And again, I’ll be here if you have additional questions about this process. Heck, I’ll be able to answer them in real time here pretty soon too, as far as what the actual surgery and recovery period look like. I’ll keep y’all posted.

And hey–if you want an unconventional Valentine’s Day activity, think about talking to your loved ones about adding that heart to your driver’s license for organ donation. Or donate blood this week (we’re in critical shortage nationwide). Or, keep living donation in the back of your mind…;) Big deal gifts, but big deal rewards.

This is a page in a beautiful, aesthetically pleasing, profound book given to me by a dear, sweet friend going into my evaluation days for transplant back in January. Hit *kinda* close to home.

“For in this life there will be many roads

we do not take, and on some mornings, we wake

and find

there are bright-orange barricades

closing off entryways

and bridges, lakes, and cityscapes

we long to go and see.

We have a duty to focus

on the road before us–

to dream of the destination but never forget

to delight in the drive […]

This is the fuel we need to journey wide.”

-Morgan Harper Nichols, in How Far You Have Come

I opened to this page on the day I learned I couldn’t be a match for Grace, and I’ve revisited it several more times since. Timely goosebump vibes.

Phew. Thanks for reading, again, buddies. Here’s to trusting the process. (Which most days I’m downright terrible at). Thanks for journeying with me.

And thanks for wrapping our family in love.

-OK

Lol did I get your attention? I’ve talked to a limited number of folks about this so far, and each time, realized there’s literally no casual way to bring this up.

Hey friends, I’m back. I planned to leave this little reflective blog behind with my transition to a new phase of life. That being said, the “latest and greatest” is pretty complicated around here, and I’ve some big stuff to share.

Wait…back up…

Grace is my younger sister, in the middle between Belle and I. Her complex medical journey has spanned almost her entire 20 years on this planet. The peak moments? Leukemia, bone-marrow transplant, epilepsy, and brain surgery. She sees specialists for basically every body system. 

A bit ago, we discovered that Grace’s liver is riddled with anywhere from 50-100 benign (non-cancerous) tumors that are all growing by the year. She was hospitalized once in the summer, and then again this past fall for some serious abdominal pain…pain caused by tumors that had begun to bleed. Internal bleeding=less than awesome.

The second hospitalization is when the docs told us that the most sustainable solution to Grace’s liver predicament was to get a replacement. These tumors will only continue to grow, and as they grow larger, there is increased risk for them to bleed, and/or turn cancerous. Enter the liver transplant conversation. 

Grace is currently stable, in comparison to many other people in end-stage liver failure. Her liver is kind of a ticking time-bomb we’re just hoping will hold out to not bleed again soon, but it is still miraculously functioning for her for the time being. This means she is very low on the list to receive a liver transplant from a deceased donor (think your organ donation heart on your drivers’ license). Those go to the highest need first. And they’re hard to come by.

Y’all, the liver is MAGIC

Here’s the part where my little nursing brain geeks out–the liver is the sole organ that can regenerate, meaning that it is an organ that can be donated by a living donor. The liver is segmented, so you can remove the right lobe, the left lobe, or the left-lateral segment small corner of the left lobe from the donor, and transplant that portion into the recipient (after that dud liver is out of there). The donor’s liver quickly regrows to the size they need to return to their needed liver function. And the transplanted partial liver in the recipient quickly grows to the size that they need too.

SO COOL MY DUDES. If you want more of the specifics, let’s grab a coffee– I LOVE this anatomy conversation SO MUCH. I’ve learned more about the liver in the past three months than I ever imagined. It’s pretty dope. 

So here’s the dealio– a bit before Thanksgiving, my parents and Grace did a long evaluation with the transplant team. Soon after, I began the process of inquiring if I could be her donor. I felt so fortunate to be in a place in life where I felt I could do this. I live in-state, I’m young/healthy, I’m not taking care of a family, and I have a job that is supportive and would be protected should I need to go on leave. My parents also are both over 55, so were automatically ruled out.

I answered a questionnaire, got labs drawn, and in January, went through a 2-day evaluation with the transplant team which included various imaging and conversations with the surgeon, a liver specialist, a dietician, a psychologist, a social worker, and my nurse coordinator who had walked me through the process up to that point. 

Everything seemed to be affirming this decision that I felt was “meant to be”. I could’ve been ruled out at so many steps.

Then my imaging came back.

My imaging showed that I have “normal-abnormal” blood vessels in my liver. They work great for me, but wouldn’t work well in surgically removing either my right or left lobes of my liver. We clung to one last sliver of hope that I could donate my left-lateral segment to Grace, hoping that her small 4’6” frame would work in our favor that that portion of my liver would be big enough to fit her. Close, but no cigar. 

I’m being a little flippant about this part because to be honest, that phone call that determined I couldn’t be Grace’s donor felt like shit. It was completely out of my control but oof–big time tough. Ugh.

A big ask.

So now comes the extra-tough part–relinquishing control, and handing over the relay baton. The transplant team has advised us to cast our net out wide, to increase our odds of finding Grace a new donor in a timely manner. 

This is a huge deal. I can’t explain how humbling and difficult it is for us to ask of such a HUGE gift of someone. There are no words, even for this rambler.

Our next steps right now are just sharing Grace’s story and trying to have faith that somewhere, somehow, a match for Grace is out there. Please help us spread the word, feel free to share this with anyone you know too.

If you want to inquire about being a donor for Grace, the first step is to take a brief online survey. The very first thing to know is that donors must be between 18-55 years old and be Blood type O for Grace. Donors also must be COVID-vaxxed.

More info can be found at the site below, and of course, feel free to reach out to me too–I may not be a professional but I felt very well-informed by the team as I worked my way through this process and can pass along what I learned. 

There is a button on this site if interested in “living donation”. And from there, somewhere along the questionnaire, there should be a spot to be considered specifically for Grace. https://www.uchealth.org/services/transplant-services/living-donation/ 

Thanks for reading, amigos. Grateful for our supportive circle, especially now<3

-OK