dear_donor

Madyson Ysasaga

Professional Patient: Cystic Fibrosis🌹// Double Lung Transplant 🙏🏻 2|8|17 // HTX Med Center 🏥

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“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
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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
“No offense, but aren’t you a little too young to be here?” 🤦🏻‍♀️ If only disease was age discriminatory 🤷🏻‍♀️ // I was once met with this question during one of my pulmonary rehab sessions. Bare in mind, the average age of the patient population was over 60 years old. Then there was me 💁🏻‍♀️ // Did you know Cystic Fibrosis is called an invisible illness? That is because there are no OBVIOUS (visual) signs or signals that a CF person has CF, or that they are sick from something, anything for that matter. (Besides the ahem ahem* chronic cough 😉) Which brings me to, because I physically looked healthy, I was often met with false assumptions or accusatory questions surrounding why my cough sounded the way it did. Did I have asthma? Was I a smoker? Or most complicated of all, was I sick? Yes and no. Yes I am sick, but to your concern, it is not contagious. My sickness is chronic, you can not catch it. Or then of course, there was always my “I wish I could say this” alternative response. “If you think that was bad, you should see my insides.”😉 #cfawarenessmonth #curecysticfibrosis #invisibleillness
“When Jesus therefore saw his mother and his disciple standing by, whom he loved, he saith unto his mother, Woman, behold thy son! Then saith he unto the disciple, Behold thy mother!” John 19: 26-27. // Happy Mothers Day. I know this day must be hard for you. How can you celebrate your motherhood after having buried your child? For most of my life, I looked at my mother and implied the savior’s command: Behold thy “daughter.” But now, Christ’s other command was given to me, as spoken to by your daughter: Behold thy mother. // Donor mother, you gave us this day, this moment, to squeeze and breathe easy. I pray that I will continue to grow into the woman that will make my mother, your daughter, and you proud. Thank you for raising my hero. #becauseofanorgandonor #thankyoumoms
Cystic Fibrosis is most known for being a respiratory disease, marked by thick sticky mucus and a chronic cough. Mucus is naturally produced in all bodies to serve as a protective barrier to help protect the body from viruses. But because CF mucus is thicker, it is more susceptible to viral infections that settle and grow in the respiratory tract causing severe infections . As CF progresses the continual exposure to these infections causes permanent lung tissue damage, or inflammation. This is how and why CF is a progressive disease: infection ➡️ inflammation; increased inflammation ➡️ more prone to infection; another infection is caught, and the cycle continues. // This is how and why Cystic Fibrosis patients both are sick so readily and frequently. It also explains why CFers have such a difficult time breathing. Common symptoms include a chronic cough, wheezing, and shortness of breath. // More on daily and critical treatment care in a later post, or the CF “normal.” 🤭😷🤧 #cfawarenessmonth #curecysticfibrosis
Happy Cystic de Mayo! 😉 these are mis maracas, salt and water. // Did you know that Cystic Fibrosis is the result of a mutation in the CFTR protein? This protein regulates salt and water transport in the body. When the body is unable to regulate these substances, the results of which are Cystic Fibrosis, which in short looks like thick sticky mucus on critical organs of the body. Primarily the upper and lower respiratory tract (sinuses and lungs), and the digestive system, which means pancreatic insufficiency. It also manifests itself in abnormal amounts of salt in sweat. // More to come about the respiratory and pancreatic breakdown, as well as why CF is considered an invisible illness, and how to spot a CFer. 💦😷👅 #cfawarenessmonth #curecysticfibrosis
Cystic Fibrosis is often referred to as a genetic disease, or a chronic disease, and a terminal disease— all of which are true. These words are not synonymous as often presumed. They mean and explain different aspects of this disease. So what do they mean? Genetic, you are born with it. Chronic, you will have it for life; there is no cure. Terminal, you will die from it. (Ya, the other words sound better don’t they 😉) So what can you do? Listen to the professionals. Take your pharmaceuticals. Seek out proper procedures. Adhere to your advised protocol. But above all else: play hard and pray harder. 👊🏻🙏🏼💪🏼#curecysticfibrosis #cfawarenessmonth
“I hope that we never lose sight of one thing— that it was all started by a mouse.” — Walt Disney // “And I hope that we never lose sight of something else— that it was all started by a mutation.” — Madyson Ysasaga // Happy Cystic Fibrosis awareness month! More posts to come explaining more about the disease that brought about my double lung transplant. 💜🌹💜 #cysticfibrosis #CFTR #deltaF508
“Be the rainbow in someone else’s cloud.” — Maya Angelou // This quote has served as the theme for Donate Life awareness month, 2018. Yesterday, the Baylor St. Luke’s transplant division hosted their annual Gift of Life service. This is a hospital sponsored event for transplant recipients and families, medical teams, hospital personnel, and donor families. Multiple mini-addresses were given by various representatives, one of them was the father of a 24 year old organ donor. // As he shared with us his daughters story, he recounted the night of her passing, peacefully pacing the hospital halls, until he was told the news and was asked a jarring question that stopped him in his tracks. “Your daughter is dead. A representative from life gift would like to speak with you. She registered as an organ donor.” Candidly he expressed that he hadn’t thought about organ donation before. The paradox right then of death and life gift was very profound. As he chose to honor her choice, he quoted a saying she would say: “My disappointments are God’s divine appointments.” — Anna Klein, 24 year old organ donor. // Anna saved 5 lives that night. The recipient of her liver was in attendance at yesterday’s service. 22 people a day die on the waiting list. Take 60 seconds and register today. Visit registerme.org. “Be the rainbow in someone else’s cloud.” 💀🌈😇 #becauseofanorgandonor
I used to think about the things that my body should have been able to do, even though it shouldn’t. Now all I see are all the things that my body could do, even when it couldn’t. The body is a blessing, and that movement is a miracle. #rehabilitation #physicaltherapy #sickisstrong
“Be still and know that I am God” Psalm 46: 10 #becauseofanorgandonor
“It’s kind of fun to do the impossible.” — Walt Disney #becauseofanorgandonor
If only retail therapy were considered by health insurance as “medically necessary.” 🏩🤷🏻‍♀️🛍 @madewell #outpatient
“Why seek ye the living among the dead? He is not here, but is risen...” —Luke 24: 5-6. // Happy Easter, everyone! This sacred sabbath is April 1st. In the transplant community, this is also the first day of organ donation awareness month. // Jesus Christ is my savior and redeemer. He lives. I know because of his resurrection, my donor too will be resurrected. And because of them, I have been able to experience a resurgence in this life, and a resurrection with them in the life to come. Our communion will be a celestial one. #helives #becauseofanorgandonor // This month, keep an eye out for more organ donation awareness spam! At least more than usual 😉
Why is it that hospital blankets are hot for only a hot minute? #chronicallycold
“Have you learned your lesson?” I was met with this question from one of my transplant coordinators when I was violently ill this past year. It was a fair enough of a question. I had to ask it myself, but I phrased it a little differently: “what lack I yet?” She was coming from a physical angle. I, on the other hand, was asking from a spiritual perspective. Had I not learned and been through enough? I hadn’t, as it turned out. It was the old adage of “the more I learn the less I know.” Only by expanding my experience was I able expand my empathy. If learning my lesson helped me learn more about the experience of another. I guess I’m okay with that. The burden is a bond, and that bond is a blessing. 🙏🏼🏥🤝 #becauseofanorgandonor
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