dear_donor

Madyson Ysasaga

Part-time patient — Full-time person // Cystic Fibrosis - Double Lung Transplant #becauseofanorgandonor #patientprescriptions

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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
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#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
Along the Sea of Galilee, Jesus Christ performed the miracle of feeding the 5,000. A group of people who had chosen to follow him, because of the miracles he performed upon the diseased. With just 5 loaves of bread and 2 fishes, all were feed, with 12 baskets of food remaining. // So, why on an Instagram account, that is dedicated to discuss disease, of all Christ’s healing miracles, why would I bring up feeding the 5,000? I bring it up because, I want to ask you a question, have the 5,000 been feed since? I believe yes. I know yes, #becauseofanorgandonor . // One organ donor can save up to 8 lives. How many family, friends, acquaintances, and even strangers were feed by this one persons life? I’m not a strong guesstimator, but I am a strong believer, so I would say around 5,000. Register to be an organ donor. 🍞🙏🏼🐟
Familee in Galiglee 🌊⛵️🌴😊
I highly doubt Achilles had to make these kind of disclaimers about his “foot injury.” What the heel?!? 😷🧤🤷🏻‍♀️ // 🇬🇷 ➡️ 🇮🇱 #securitycheckpoint #becauseofanorgandonor
“For a true hero isn’t measured by the size of his strength, but by the strength of his heart” — Zeus, Disney’s “Hercules.” 💪🏼❤️🙏🏼 #becauseofanorgandonor
My doctors advised me to be wary of meat while traveling abroad. But like come on guys, I don’t see what the big dill is?!? 😉 #porkgyro #meatcheat #outpatient #clinicconfessions
Thank you for choosing AirFrance. Have a sterile flight! ✈️😷💺 // 🇫🇷➡️🇬🇷#becauseofanorgandonor
“Whatever you are, be a good one.” — Abraham Lincoln // CF awareness month is coming to a close, but the awareness continues. Which as those of you whom have been following this account know, that is what its purpose is for. I hope the facts and education have served as a stronger foundation about why I do what I do. But I am ready to return to my authentic voice in parting with you my feelings and emotions. If nothing else, I intend this account to make you understand this disease, my trials are NOT JUST physical. God does not call the qualified, he qualifies the called. He will make you a “good one.” Especially for those whom chronic disease is their calling. #cfawarenessmonth #curecysticfibrosis
Prescriptions 💊💊💊& Passports 🇫🇷🇫🇮🇮🇱 #becauseofanorgandonor
The millennial is in 😉✌🏼😷 #transplanttuesday
“O ye, my people, lift up your heads and be comforted; for behold, the time is at hand, or is not far distant when we shall no longer be in subjection to the hands of our enemies, notwithstanding our many strugglings, which have been in vain; yet I trust there remaineth an effectual struggle to be made.” — Mosiah 7:18 // Myth: transplant is NOT a cure for Cystic Fibrosis. While transplant does “fix” the most critical organ, it is not a solution for everything. If you saw my previous two posts one, addressing the #CFnormal and two, addressing #endstagedisease ; I feel the need to make the disclaimer that not all those things are relevant to my PRESENT health circumstances. Since receiving my transplant, I have not been doing four hours of breathing treatments daily and I am no longer in end stage disease. That is the stage you are in when you are on the waiting list. I bring awareness to this because this is still my cause and those are still my people in that level of quality of life right now. Please do not misinterpret my posts as being synonymous with updates. // CF needs to stand for Cure Found. This is my disease, but this is not just about me. May is not Madyson Awareness month, this is Cystic Fibrosis Awareness month. // The Cystic Fibrosis Foundation has recently developed pharmaceuticals that address the CFTR gene. But for the CF “adult” generation, many transplants will still be necessary. Please donate to the CF Foundation that these childhood CFers might be the first un-transplanted generation. #cfawarenessmonth #curecysticfibrosis #curefound
End stage lung disease for Cystic Fibrosis is inevitable. It is just a matter of when it is going to happen, and educating yourself on your options. This means the lungs are starting to fail, or that the pulmonary lung function is under 30%. // CF families are informed very early on about the necessity and scarcity of transplantation. My PEDS doctor put it this way, “factory parts are always better than the upgrade.” // Ultimately it comes down to listing for a double lung transplant, or getting ready to be referred to hospice. In either event the mandate is to get your affairs in order, which is doctors code for prepare to die. Being listed for a transplant is not a guarantee for an improved quality of life. What it is is your best and only shot at it. #curecysticfibrosis #cfawarenessmonth #endstagelungdisease
Living life with a chronic disease, like Cystic Fibrosis, is more than just a diagnosis and a list of symptoms. It is a life of on going, never ending daily care and treatment. (Okay I heard it, someone has been listening to way too many drug adds on TV 😜) // What most people don’t realize is that a CFer spends around 2 to 4 hours on breathing therapies and take an average of over 60 pills a day. Besides daily treatments, pre-planning, scheduling, clinic visits, insurance calls, and pharmaceutical pick ups happen on a weekly basis. I could go on about the specifics of each of these things, and you’d be surprised by the boxes and boxes this stuff can get broken into, but “ain’t no one got time for that!” And honestly, if you are not a patient yourself or are regularly around someone who is, the specifics are a bunch of unnecessary medical jargon. But I do want to leave you with this understanding: chronic disease never clocks out, especially Cystic Fibrosis. 🕕💨🕒💊🕔🏃🏻‍♀️🚴🏻‍♀️🕕💉🕗🥪🍎💊🕘🏥👩🏼‍⚕️👨🏻‍⚕️🕚📱🕕😴 #curecysticfibrosis #cfawareness #cfnormal #cfclock #lifewithcf
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