Madyson Ysasaga

Part-time patient — Full-time person // Cystic Fibrosis - Double Lung transplant

“Never let schooling get in the way of an education.” — Mark Twain // I am very proud to announce that I have been re-admitted back to school at Brigham Young University, winter semester 2019!!! 🙏🏼😭❄️🎉🙌🏼 It has been four years since I have been enrolled as a student on a college campus. I have since been admitted as a patient at Baylor College of Medicine, with a masters in disease, emphasizing in transplantation 😂 // Being suspended from school because I physically couldn’t keep up with my school schedule and my sickness was tough medicine at the time, but I guess the patient needed it. Four years and four lungs later, I am coming back! The most important step in the recovery is the return. // P.S. Nice win boys! 🏈😉 #becauseofanorgandonor #riseandshout #byubound #gocougars #curecysticfibrosis
My 18 month post transplant appointment happened yesterday. The overall results concluded stability. My overall reaction concluded disappointment. The cause of my grievance? My PFTs, or the pulmonary function test 💨 // How wise or fair this was or not— I don’t know— but I gave myself a metric to determine how successful my transplant was. That metric was my post-transplant PFT had to be higher than it ever measured pre-transplant. That hasn’t happened yet. Not even close. I realized, I never really had a test to take, I had a choice to make. After having gone through all that I have pre-transplant, I do know and recognize that stability is a gift. There is a word for stability. I think it’s called health. 🎁❤️💪🏼 // I’m beginning to understand how health looks and feels now. It can look and feel like anything! It is not as a select or typed system as I believed it to be. If I were to personally assess my health, outside of the clinic, I would consider two things: 1) all that I am voluntarily physically able to do, because of my body & 2) all that I involuntarily physically do, because of my body. // You are healthier than you think. Health is not scarce, it is abundant. It just took me 18 months, four lungs, and countless PFTs later to figure that out. #becauseofanorgandonor #curecysticfibrosis
I woke up like this! 👆🏼😱😷😂 #truth #realtalk #discharged #anesthesia #sinussurgery
😘 About to get sedated for sinus surgery! If all goes well, my favorite RN (John) and I will be engaged for the 7th time 🏩👨‍⚕️👰🏻💒 #sinusitis #curecysticfibrosis
“Mutation: a significant and basic alteration, change.” // A pretty profound statement to define the foundation of your physical make up and well being: a significant, basic, change. Changes are critical, they care ca lateral, and if we let it, they are caring. Who or what else could care more about you and your body progressing than you and your body? I don’t believe our bodies were ever interested in perfection being it’s goal. Perfection was the ideal. A cause and value that we knew we would never reach, but for which we’d die trying. Which is an extraordinary thought. // If controlling our bodies obsessively to the point of perfection is our goal, I believe we are already on the wrong path. Our bodies want to be curious not correct. Curiosity is the path of change, of a mental change that might yield a physical change. You might not be physically born a mutant, but mentally try dying as one.
Pulling out a weekly pill case, organized by the day and the hour, nonchalantly is nearly impossible. I try to be normal about it, because to me it is. It does not take long, however, for me to be reminded how normal it isn’t. “Are you OKAY?!?” they ask. “Yes. Yes I am,” I smile back, “These pills, you see, make it so.” 😌💊💧#becauseofanorgandonor #curecysticfibrosis #invisibleillness #patientpride
I don’t think you care whether I work from 5 to 1 or 1 to 9, or how many steps I got on my fit bit today. I don’t think you care about the amount of tips I got, if my name was mentioned in any customer comments, or how fast my picking productivity was. I think you would care about how kind I was today. Did I take the time to have a thoughtful interaction with a customer or co-worker? Was my real hustle today helping others? // When I breathe I think of you. What would you do? What would you have me do? By your body, your breath, you saved a stranger. That stranger was me. Because of your body, your breath, I will serve a stranger. A stranger like you: a registered organ donor. #becauseofanorgandonor #feedingthehumanspirit
Gettin’ my radiation on! 💛👃🏼💚👃🏼💙👃🏼❤️👃🏼💜 #CTScan #CATScan #sinusitis
Patienting 👂🏼👅 👃🏼 #otolaryngology #saltysinuses #polypoverhere
I wear black to respect the dead 👆🏼💀 Run one done! #becauseofanorgandonor #curecysticfibrosis #pipedreams
When everyone and everything else is pulling; remember to reach 🙏🏼 #nearermygodtothee
If “impossible is nothing,” patience is everything. #TBT #patientprescriptions #becauseofanorgandonor
Where we have been has nothing on where we will be. // Something happened to me yesterday. Something I am not used to happening, because it has never happened before. My body could exert itself harder, longer, faster. My “pauses” were less frequent and less timely. I realized this thing was (what in pulmonary rehab was called) my “recovery period.” It would take me minutes of sitting for my heart rate to go down and for my oxygen rate to go up. I was unsteady, unstable. Now my body has gotten fitter to acclimate, repair, rest, and repeat without the stress or the strain of it all I used to feel physically and emotionally. // May endurance no longer be my enemy, may strength no longer be scary, and may intensity no longer be intimidating 🙏🏼 #becauseofanorgandonor
#sideeffectsmayinclude 🤦🏻‍♀️👊🏼🙅🏻‍♀️👋🏼
“Do one thing a day that scares you” — Eleanor Roosevelt. // Taking bathroom selfies ✅ 🤷🏻‍♀️ and / or Begin working with a personal trainer ✅ 🏃🏻‍♀️💪🏼 #becauseofanorgandonor #mondaymotivation
Channeling Banksy 🤜🏼 @vogmask #throwback 🔙
Shalom y’all 👋🏼 Back in America, or as the Texans like to call it, Texas! 😉 // It’s been a few days of letting my body relax and recover and get back into my regular routine. As this trip reminded me multiple times, transplant is NOT a cure. Without all of my respiratory therapies, I was able to travel a lot lighter, but the most important thing I took was still a fighter. // Living with chronic illness is an on going battle of balancing symptoms and side effects. Heat, de-hydration, and fatigue were pretty regular. Those side effects are also just from being a person, but with my medications, my transplant team has always advised me that I need to take them much more seriously. There was bloating and constipation, high and low blood sugars, excessively salty sweat, and severe calf and ankle swelling #cankles . // I do not bring this up for your sorrow or support. I bring this up to say, it was still worth it. I was able to walk, and see, and breathe. Breathe and move through the setting and the stage of the stories that have most inspired me in my personal journey. #Greece #Israel // I thank my family for all the planning and resources it took to make this trip happen. My transplant team for giving me their blessing. And to my stranger, my Good Samaritan, the miracle: #becauseofanorgandonor
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