Striding with the Strubes

04/30/2026

And just like that, a decade has slipped by—a decade of breathing effortlessly. It’s hard to even remember the years of gasping for air. Those memories have become a blur, a reflection of constant life-saving treatments, tube-fed nutrition, IV medications, and a nasal cannula delivering oxygen to my failing lungs.

A decade has passed since I lost only a part of myself, while a family lost an irreplaceable piece of theirs. My heart aches deeply for them, and not a day goes by without feeling the weight of sorrowful guilt.

I wish they could see me now, ten years later…. I wish they could witness the profound impact their loved one’s gift has had on my life. It’s a gift that keeps on giving in countless ways. I have a life I never imagined possible. I have had a body healthy and strong enough to achieve so much and even more so this year with the miraculous process of becoming pregnant.

There was a time when this was deemed “impossible” for me. With God’s strength and trust, and the unwavering support of medical teams, my body endured an almost full-term pregnancy, bringing our second child into the world in November. Words fail to capture the beauty of the experience, and having a healthy baby boy was a blessing beyond belief, a dream come true to complete our little family 🩵💗

Yet, post-transplant and CF life still presents challenges. Managing complex therapies can be exhausting, both emotionally and physically. The loss of so many CF and post-transplant friends in recent years weighs heavily on me. I also lost my precious little emotional support dog, Fendi Fufu, She was a star of Striding with the Strubes & helped me through the toughest days before and after transplant. She definitely took a piece of my heart with her & memories I will cherish forever.

Every day, I am reminded of the immense power and impact of the support & prayers I’ve received on this journey. I am profoundly grateful for my family and friends, near and far, my hometown community, the KC area community, and, of course, my CF and Transplant teams. I am overwhelmed with gratitude for my tribe. Thank you to all the nurses, doctors, and surgeons who have treated me with compassion and expertise, working tirelessly alongside me to ensure we are always aligned.

My promise to myself is that I will continue to honor my donor for as long as I can.. I will never regret the sacrifices I made to go through a life saving lung transplant. Life has become even more incredible than I ever imagined in a decade because of the fight I put up. Thank you to my hero in heaven & for Gods hand in finding the perfect match 🫁 from my angel donor. What a ride it’s been and so much worth celebrating on this 10 year milestone!

05/13/2025

My heart has been heavy, as I lost not only one of my greatest mentors on my journey with CF & transplantation -but a wonderful friend as well. I have never been more impacted by someone than this girl right here. She will always be a big blessing to me, someone who “got me” and we shared so so much in common. She was the best wife, sister, friend, CF advocate and her most proudest title, Mommy. Her legacy and fearlessness will carry on through her sweet & spunky little Riley. It will also carry on in the thousands and thousands of people who she inspired along the way. She fought so many battles but especially her last big cancer battle with unfathomable strength . I always told her she was the most bad a** person i knew. She always will be to me, she was superwoman. Katy girl, you were just truly the best. 💔

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04/29/2025

On the early morning of April 29, 2016, the operating room doors opened for a young girl living with cystic fibrosis—a disease that had taken so much from her and left her sick and dying. But she entered that room with a spirit full of hope. Hope that the gift about to be placed inside her would give her the chance to live again. Despite the pain and loss that made this gift possible, it was a gift worth everything. So worth it.

Each year, my transplant anniversary brings a flood of emotions and deep reflection—on where I’ve been, and where I am now. I often wish the pain and suffering I endured weren’t part of the path to this deep sense of gratitude. It was hard. So hard. But it was also humbling—mentally and spiritually. Without that struggle, I’m not sure I’d have the same appreciation for all the big and little things in my life. It shifted my perspective and helped me focus on what really matters.

What I’ve been able to do with these past nine years is a breathtaking reminder of why I fought so hard to stay strong enough for transplantation. It reminds me of the miracle of organ donation—the science, the training, the selflessness behind it all. It’s bittersweet, the idea that someone’s final act can give someone else a new beginning. It reminds me that a second chance at life isn’t something to take lightly—it’s a calling to truly live. And to do it on your own terms, not by the noise of the outside world.

Our stories are more than pictures on the internet. They teach us. They define us. My journey has deepened so many emotions—one of the strongest being empathy. Empathy for those still in the thick of their battles, for the pain they carry just trying to make it to another tomorrow. It’s hard. And it doesn’t always make sense—this “why me?” question we carry. But I’ve learned that we are never truly alone. I wouldn’t be here without the people who held me up when I couldn’t stand on my own. The ones who carried the burden when I was too weak. The voices that said, “You’ve got this,” when I truly believed I didn’t. It’s a reminder to show up for others. Even the smallest support can mean everything.

Every year on this day, I plant flowers. This morning, I sat outside with my coffee and soaked in a moment of peace. I don’t usually see butterflies this time of year at my place, but today, a large, beautiful one flew right to my arm and landed on one of the flowers I had just planted. I saw it as a sign. It reminded me of a quote in one of my notebooks:

“We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.”
—Maya Angelou

Thank you for this sign, my angel donor. Thank you for giving me life in your final moments and allowing me to spread my wings again. Without you, my story wouldn’t have continued. God bless your family, who I know are missing you especially today. I hope they know that I will always honor your gift—and live this life to the fullest.

Nine years. I can’t believe it’s been nine years. I am grateful for it all.

04/30/2024

“Life cannot be measured by the number of breaths we take, but the moments that take our breath away”

At 8am exactly 8 years ago the words “its’s a go” came from my Nurse after she answered a phone call in the OR. Before I could even fully grasp what would happen next I see the vast bright lights above me turn to darkness.

No one can quite prepare you for the experience of undergoing a life changing surgery and the recovery to come after. I have offered glimpses of the journey I have traveled through living with Cystic Fibrosis and then undergoing a double lung transplant on this page in the past. But those glimpses are comparable to the preview of a TV series. It can never tell the full story.

I realize my account has been on a hiatus for a few years. And honestly that has been a good thing for me. I needed to only focus on my recovery from my depression I fell into. The lens I felt I was under, scrutinizing me in so many ways was not healthy. My reflection in the mirror once felt like a stranger looking back at me, disconnected from the person I once knew. I needed to overcome my fears, trauma, and burdens buried deep inside me from my journey living with this cruel disease.

With A LOT of support, faith, and guidance that dark despairing place I once felt stuck inside has transformed. I am incredibly grateful that I was given this chance to heal in more ways than one. I have reconnected with the true me -spiritually and joyfully. Take it from someone who’s been there. Help is out there, use it. Give yourself grace and gratitude. Turn your focus away from that rear view mirror and slowly but surely you will get to the destination you actually want to go.

I didn’t get to this point to turn back now, to push rewind. I have fought hard as hell to get where I am today. To continue these seasons of life I as I know it. We have ONE lifetime, ONE story to make it a good one. My heart is bursting at the seams with the immense gratitude I feel to be still be here 8 years later writing these thoughts all down. I am still that determined girl with a positive attitude -no matter what is thrown my way.


🩵Health update- a blessing to say my health has been doing very well. I had my annuals done and all is looking good so far with a few small things to keep a close eye on. My husband continues to sacrifice so much for me so I can stay home with my girl. We would love to grow our family as Belle asks for a sibling often, but its easier said than done for our situation. Nonetheless its on our hearts & minds-and ofcourse in our prayers for the potential to do so. We can’t believe Belle starts kindergarten in the fall. My momma heart is excited -yet breaks a little that she is growing up! It all happens too fast. She has a heart that radiates joy, compassion, and kindness. She is my little miracle, my sunshine, and hero all wrapped in one. And lastly I hope to continue to be healthy enough to get back into the workforce this fall while Belle is in school.


My life continues because of the bittersweet miracle of organ donation and my angel donor. The science, the doctors, the nurses, God in all his glory, and my family & friends who have all rallied around me to get me to this point- THANK YOU! 🙌🏼♻️🫁💚💙

04/29/2024

8 years 💙💚

06/03/2022

The last three months I have been scared, I have been sad, I have been in pain, and found myself in the darkness more then in the light. Time continues to pass, time that is precious. The time here on earth that I have always prayed to Jesus for.

I have kept my space from social media and posting for awhile now. Truth is it’s hard for me to open up about how I am doing mentally. I have been trying so hard to continue to be strong and brave, but I’m just tired from it all. Many won’t read this long post and that is ok. It is almost like a journal.. a therapeutic endeavor for me. If it happens to change one persons life or perspective I find these words are worth sharing.

The past several months I have become someone I don’t even recognize anymore. When I look in the mirror I don’t recognize the person looking back at me. The journey of fighting for my life every single day, putting my brave smile on has started to diminish in slow motion. Worry, pain, and days of pure darkness & tears have crept up on me. I wasn’t the same throughout this recovery experience of my last life saving surgery. Maybe I have been feeling this way from the stroke..maybe it was from all the pain,or maybe it was just my body & mind doubting if I could overcome anything more at 31 years old.

The day before my stoke I blew my highest lung function with the angel lungs. It was so gratifying & assuring my body was doing well and recovering from having COVID. Then within 24 hours those steps forward that I thought I was on, turned into ten steps back. Defeating doesn’t even quite explain it.

Sometimes we are just not okay. Sometimes you lie in bed and hope to fall asleep before you fall apart. Thirty plus years of reality has awoken in me, the trauma I have experienced, yet never have fully coped with. The reality has hit me that I am officially exhausted from fighting for every breath. How much can a person endure before they fall into pieces?

I am always fighting through the odds of survival. Fighting through being a human pin cushion and enduring over 50 procedures and surgeries. Fighting through the bitterness of “why me”. Fighting through the stress of medical bills. Fighting through the stress of all I have to miss out on because of my health. Fighting through losing friends to my same disease. (The survivors guilt is real. )

I have never been one to give up, my faith is strong, I’m doing my best. But suddenly my best doesn’t seem to help anymore. I don’t want to live this way, I tried not to let these feelings break me.

I have accepted that it’s ok to have a weary heart, to feel alone, to be struggling. I know the most common comments I hear are: “but you have so much to be thankful for”, “how could you be sad?” “What will make you happy?” “It could be so much worse, count your blessings.” “It will get better tomorrow..it’s just a phase.” As these are all relative, I know I have caught myself saying this to someone.

I turned 32 a few days ago. I am thankful to see these numbers & beat the odds I always face. But you can be thankful and be sad at the same time. You can one day be happy and suddenly overflowing sadness creeps in the next. Your mind won’t stop running and your tears won’t stop flowing. You can have all the faith one day and lose sight of Gods purpose for you the next. You can think your worthless, a burden, and then be reminded how much you mean to someone. This is the process of depression. To be physically sick and mentally sick, well it can be hard as hell.

At my worst there was a point where my mind was giving me thoughts that I was better off dead. I fell off the mountain. How far is too far? I didn’t know how to cope with it all…And that’s when I really needed & got help. I needed to get out of this dark place and find me again. I don’t know how someone could heal through this weakness & process of mental illness without support in someway or another. One thing I’m thankful I did was be upfront & honest with not only myself but my loved ones so I could get the help I needed.

We can be so hard on ourselves, I know I have been. The advice I have received of giving myself patience. Giving myself grace can go a long way. Some days are harder than others. There is always a lot going on in our lives, in our world, and this can mean our mental and physical health takes the back seat. We are just “too busy” or “too embarrassed” & “afraid to confront our deepest fears & anxieties.” I am trying to take one day at a time. I am trying to be gentle with myself in my sadness, in my pain.. My most precious reminder to myself is to take a deep breath. This breath is the most precious gift of life I have ever received. This is my second chance.

There are many compassionate, knowledgeable, and impactful people out there who will help you on your journey with mental health diseases. I am thankful for the resources out there for mental health, I promise there will be somebody who could change your life for the better. I now feel confident that my team who is managing my mental health have already helped tremendously.

I will get through it day by day. There will always be uphill battles. It takes time. It takes faith & hope to let go of the demons breaking us. It has taken valuable help, support, & words of faith from my loved ones. The strong love of my husband & admiration of my miracle daughter. It’s given me some perspective back that I needed. I look into my sweet daughters loving eyes and I know she needs me. She needs a mommy who will fight with all she has to be by her side forever.

Life is short and if you want change before it’s too late please find the right ways to do so. You are never alone..don’t forget that.

“when you get the choice to sit it out or dance….Dance... I hope you dance.”

03/02/2022

“You only live once; might as well be a badass.”

This has been the title of this new journey I have endured. I am still trying to process all I have managed to go through in the last two weeks. There have been too many challenges to count that come with not being “perfectly healthy” .. and it has definitely made life more interesting. I am sure many of you can relate when you have had to suddenly experience a life changing emergency, diagnoses or illness. They can be the biggest punch in the gut or just an overwhelming power of devastation that takes over you.

After a emergency visit with losing function on my left arm. We found out I had a small stroke, affecting my left side. Thank goodness I was in the time frame of stroke protocol to be administered TPA. Spent a week in the Neuro Intensive Care Unit doing a multitude of test/imaging/minor procedures. The results of all of this led my doctors to find what they thought was a mass with a small clot attached in my left atrium of my heart. It was critical we got the clot out before it could advance more -putting my life at a great risk. Unfortunately; they believed my COVID case was the source that put my body at greater risk for clotting. They suspect it brought this blood-clot/mass they saw on imaging. This is when they told me I would need open heart surgery…and within the next couple days.

Unlike my lung transplant I had time to process that intense of a surgery, but with this news I did not. The surgery was a success, and by the grace of God their was no mass, they removed all of a large blood clot that formed on a suture left in my body from my lung transplant. So in a way, the “left behind”suture could have saved my life since the clot stuck to it and didn’t have time yet to move beyond that point and cause devastating consequences. I will be monitored closely the following months, but I feel so grateful for the Neuro team, care of amazing nurses, and especially the CardioThoracic surgical team who removed this clot in time. I am always a unique or complex case for these doctors and nurses to take on, and usually I don’t get the “easy” way out, but we worked together and found a way. I do have a long road of recovery ahead of me, but as hard as this stroke and heart surgery are to endure, I realize again what a miracle I am to be here today, typing this update.

I have to just roll with the punches as they come to me. I have to get up, put my positive pants on so I can keep the mentality to use my hope & strength within to get me through this. I have a little girl I CANT wait to be with who inspires me to do everything I can to heal & get back to our “normal”. I cannot fully express my gratitude for all the ones who have been there for my family and I. The prayers were powerful, the positive energy sent to me was powerful. I felt all of it as it surrounded me and continues to surround me.

I get to go home later today and my emotions are everywhere. I tell my story not to get praise, but so others may know hope. They pulled my bandages from surgery and at first seeing the 8 inch line that cut through my sternum was terrifying, but now the more I get used to it I think it’s pretty bad ass! Another one to add to my already scar covered body. They all tell a story. And what a beautiful thing it is to be able to stand tall & say, “I fell apart, and I survived.”

02/24/2022

I know everyone is anxiously awaiting to hear how our girl is doing; and I am relieved and thankful to say she made it through surgery great. They were able to successfully remove the myxoma and blood clot in the left atrium of her heart. She is now recovering in the ICU and still has a long road of recovery ahead; but we hope the worst is behind her!

We are so thankful to her amazing medical team, and for all those who have messaged, commented, and prayed 💕

02/24/2022

Some days are just bad days.

Sometimes we experience sadness to later learn that it’s actually guided us to a deeper path of reflection. To reflect on a deeper meaning or sense of gratitude in our life.

Sometimes I have to remind
myself that not every day is going to be a good day. I can be grumpy, mad at the world, and I can just be a big ol’ pain in the a** like my family says ..and that is just the way it is! 😉 We have ups and downs..up’s and downs..and up and downs. It is a cycle -and occasionally a vicious one. We can always hope for more ups than downs, but I think there are certain times in our lives where it just doesn’t balance out. However: I do believe and try to live by the popular quote that “tough times won’t last, but tough people do.” And I hope this rings true for everyone who is living in a time of uncertainty or suffering.

I get how hard it is to live in the unknowns and not having or knowing the “right answers”.. heck, life will always be this way…I know it has been for myself, Kelsey and my family. However; I think we can all agree this life of uncertainty is very relatable in our world today as we are accepting and learning to navigate life as we know it in this pandemic.

Everyday I have had to make sacrifices both big and small for the hope of continuing better days ahead. I truly do understand the struggles and the strength it takes to get through an awful day and just trying to make sure it doesn’t rub off or carry onto tomorrow. It really is a test, day in and day out to feel the need to fight for survival and fight for a life worth living and being proud of - however long or short my time is. I fight everyday for my little girl. I fight for my Prince Charming, Brent. I fight for my parents who have given up so much for my own survival since birth . I fight for the rest of my family and of course my friends and support systems.

These words I have written are just some of my reflections of life as I know it while I have been sitting in the hospital bed. These words also help remind me to bring my inner strength out when I’m needing it most. My body is still weak from the stroke, It’s bruised and broken from all the pokes from ivs, blood work and tests. They inserted a tunneled central line today that did not go as “planned” or as easily as hoped for, leaving me with more incisions and pain then I should have following this type of procedure.. And to think - this is all the case because of my diagnosis of COVID-19 a couple weeks ago and the clotting being a complication I suffered from. I truly am just lucky to be alive right now, writing this post. It all blows my mind how complex/deadly this virus can be. And now I will be enduring an open heart surgery because of it. I would be lying if I said I wasn’t scared - because it is scary.. scary as hell.

In the end though, I am going to do what I got to do. To push my fears aside and focus on my strengths & will power to fight so I can get home to my little girl and my family. It will be a long road ahead, but I try to remain optimistic and pray God leads me on a gentle path of healing. I am so grateful for the support I receive each and everyday. I truly am. I am grateful for my angel lungs that are doing great as I go through all these major changes in my body. I have had the most amazing doctors and nurses caring for me. They help me feel confident I will get through this, and they will be there to help support me through it all. I know I have a lot of prayers & good vibes surrounding me - I assure you I can feel the energy of them all. I have a purpose and I’m a girl who never gives up because anything is possible…I am ready.

“she believed she could, so she did”

02/22/2022

Hi everyone, Kelsey here, it’s been a long time since we’ve posted anything here or given any updates. And I wish that I was updating with better news.

We need some prayers and love sent to our bravest CF’er, Katie Jo. COVID-19 Sucks.

Despite our greatest efforts, and making it 2 years of this pandemic without catching COVID; on 2/7 Kate tested positive. Despite having both vaccines and multiple boosters; her immunocompromised state allowed the virus to take its hold. Our team at KU Med jumped into action; working with her transplant team in Tx, to get her the antibody infusion. This; ultimately was successful and Katelyn was able to stay out of the hospital, and was feeling pretty good; that is until last week.

She called me in a panic because she was dealing with left sided weakness and numbness; my husband told her she needed to get to the ED immediately. They activated the stroke protocol, and administered the TPA within the window, and into the ICU she went. They believe she had a minor stroke due to a piece of a blood clot (likely developed due to the COVID-19 viral infection) that went to her brain. Luckily; she has remained conscious and lucid; the entire time, and her weakness is slowly improving. Little did we know; this small stroke ended up being a blessing in disguise; as further imaging revealed a large mobile blood clot in the left atrium of her heart.

They have been administering anticoagulants in the hopes that it would allow her body to do what it needs to do; to take care of the clot on its own.

Unfortunately; her trans esophageal echocardiogram this morning revealed that the clot is still present; so now the cardiology team and her transplant team are going to discuss how best to move forward with case. Update; she will be having open heart surgery Thursday.

While this is not the news we were hoping for, our girl is prepared to do whatever she needs to do.

This pandemic has been hard for all of us; but I think especially so for the immunocompromised and high risk individuals. As we feel alienated, and forgotten. The fear of catching this virus; that is so much more then a cold or the flu, has been extremely real for my family. The fear of what happens if Katelyn catches It, and now; those fears becoming our reality.

Please be considerate of people like us; who also have hopes, dreams, families, friends, and lives we want to live and enjoy. Please be kind when people are wearing masks; for you never know what their story may be. Please consider getting a vaccine to reduce the spread in the community so people like Katelyn can continue to spend time doing things they love with the people they cherish. We need those around us; our family members, friends, and those in our community to be vaccinated to help protect us. We are also doing our part, but we deserve to live our lives too; especially when so much as already been stolen from us due to Cystic Fibrosis.

Katelyn requests at this time for any well wishes be directed on the comments of this post; or they can come to me, Kelsey. If you would like to send something; please Private message me, and I can give you an address.

Say some prayers for our girl; that god will give her the strength to overcome this, and for the doctors and nurses overseeing her care.

With love,

StridingwiththeStrubes