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I ROSE UP for all people with CF

Allie Hall

Allie Hall

Hey, everyone! Allie here! My story with CF is a humble one. Ha! Here it goes… I was born in Plano, Tx 1988. A year before they discovered chromosome 7 was the DNA defect of CF. I was diagnosed at birth. I had meconium ileus, so they knew I was a dead ringer for CF! I had an ileostomy and colostomy for five weeks and played in baby ICU the first few months of my life. My brother would cry when they would visit me and say, "I want to take her home now!!" I was the quickest baby to heal from my ileostomy and colostomy, so finally, I got to go home at five weeks! I was treated like a regular gal about town (Okay I was a child about town) and thought everybody jumped on trampolines and got hit by their parents (Chest Physical Therapy). I did not get the "new" orginal big honking vest until I was 12. It was gifted to me from a study Dr. Santiago Reyes signed his patients up for. I was fortunate to be one of the first people ever to use the vest! I thought everyone took pills and breathing treatments. As I got older, I realized that this wasn't the case. I had never been in the hospital for a tune-up until I was 11. But before that, I had sinus surgery at 11 because I had polyps, so they took those out. While up there..so much infection and bacteria got mixed around. What we now know is this was when I caught mycobacterium abscessus. But they wouldn't even know that I had this or that this bacterium existed until 2005. So, I had tune-ups from ages 12-18. At age twelve, an infectious disease doctor came into my room, sat me down with my mom and my sweet nurse Shanda and he explained they didn't know what this "bug" was, but it was serious, and they would try drugs that they had not used before. They put me on pill regimens so intense that my pee turned purple for years! (I'm sorry, but that was one of my favorite sleepover party tricks, along with taking 25 pills at once) I asked, at the age of 12..." is this going to kill me?" And very bluntly, he said, "If it rears its ugly head, yes." This was like a brand-new diagnosis for my family. It was no longer that CF was going to kill me...this bug would beat CF to it. But, with heavy drugs I managed to keep its "ugly head" at bay until 18. And by that statement, I mean I was run fevers of 100-105 sporadically for years. After finally going into a tune-up, the fever would stay away for a month and then fevers would come right back. It was a cycle. I never let CF define me. I had lots of friends, school, parties, proms, and only my closest friends knew I had CF. I'm pretty sure people caught on later in high school because my two-week absences of tune-up time got to be more and more through the years. But I was treated normally for the most part. I even had some school dances at the hospital! Best friends!! Godly things happened. One night I was on the verge of dying. I was 18 and just started my senior year of high school. We did blood transfusions up on the pediatric floor. Dr. Reyes was out of town. Going backwards, I had a pre-algebra teacher the year (12) I was diagnosed with this "unknown bug" and she told my mom that she had a brother in TX who worked on these types of infectious diseases, so she gave my mom one of his videos he had for his clinic. She was the sweetest woman. My mom went home popped in said video. It was super cheesy with a really sick girl going in the office in a wheelchair and oxygen then coming out walking and acting completely fine. Although we loved my teacher for even thinking of us, my mom, a normal parent in denial thought, "oh this will never be Allie" so she threw it away but we always kept in touch with Mrs. Wallace through the years... Back to that one night, of transfusions... Dr. Reyes was at a CF conference so all my people rallied to save my life that night with him over the phone. I had seen Dr Reyes since I was a baby so I trusted him with everything. Even over the phone. And my people at my hospital floor at Integris Baptist had become my family. My life was in their hands. Before starting transfusions, I let my mom know that I was in God's hands. I could feel Heaven. I could almost touch this other world of warmth and love. I told my mom I have had the best life with the best people and I was ready to go. Then Cathy (my mom) got into my face and ruined this euphoric feeling by saying, "OH HELL NO!!" So.... there's that. One of my favorite Cathy moments. Right then they came in with blood and it just looked like bags of red Kool-Aid. My sweet nurses surrounded my bed and said "just close your eyes and sleep," and I did. I woke up the next morning feeling a million times better. And without missing a beat I said, "do you remember Mrs. Wallace's brother? And she stared at me and said she was currently on the phone with my other favorite teacher getting her phone number. GOD THING! Anyway, the next day Dr, Reyes was back and walked into my room. He had told Cat and I that he had found two doctors who know about rare bugs and they were both interested in my case. One was a doctor at John Hopkins, the other was a doctor at University of Texas at Tyler. He said the doctor in Tyler was...my mom interrupted, pulled out some paper and smiled ... "Dr. Richard Wallace...and I've got his cell number and personal email..." We all three stood there for what seemed like forever...that was his guy! From then on... we'd drug me, travel the 8 hours to Tyler. He put me on meds that weren't even approved by the FDA, would cause deafness, hair loss and other side effects. Intense. We found out what the bacteria was and I would travel every three months. I was at Reyes and Wallace's beck and call! With 24/7 IV's and 24/7 oxygen, I got to go to my senior prom, graduated and made a killer ACT score. I was accepted into OU and did rush for a sorority on oxygen and 24/7 IV's. I was determined. But right before college started in 2006, I needed more oxygen and I had just gone completely downhill. Dr. Wallace said there was nothing more he could do. And because of this m. Abscessus, no one in the nation would touch me. Except some "cowboy" surgeons and doctors he had gone to medical school with at UNC Chapel Hill. They had done a few of m. Abscessus lung transplants. If anything, I'd be data. No one expected me to live through the transplant. They emergency flew me and my mom to Chapel Hill, NC.. No one in my family had ever been to the east coast. My dad drove all my equipment. I was admitted from there... stayed in the hospiyal for 6 months. A few dry runs and "dying godly moments..." I cherish those 6 months. I ache for those 6 months. I had never been closer to God. I was dying. And I hate to say it...I was no longer fighting. I was so at peace. Around 6 months of waiting and medicines not working and me getting worse... my doctor pulled Cathy aside and said there was a line of a healthy surgery and survival and I had passed the line. So, they we're going to take me off the list. My mom begged and said "what are two more weeks!? Give her two more weeks! Widen the search, give her smoker lungs...anything!!!" Literally the next day couple of days I was offered three pair of lungs... one had cocaine...I was kind of looking forward to that rollercoaster! 😂😂 One was older but then...came the perfect pair...not old...not stonerish...not smoker...it was like they were meant for me. Perfect. I went into surgery June 16, 2007. Came out the morning of June 17th. My m. Abscessus had "eaten" my lungs. I had 9 percent left. They literally had to scrape out my lungs. They looked like cottage cheese. I donated them and you usually get 20 bucks. My surgeon said they weren't even worth a dime!! After surgery, it was rough. I had only been the 13th person with m. Abscessus that they had ever opened. I was the only one of few that are still alive currently. It breaks me and I have survivals guilt always. I live for them. But with this m Abscessus... they had no idea how it was going to go. I had been the worst case they had seen. M Abscessus turned out to be a flesh-eating bacteria. It took 14 surgeries, many different antibiotics and new methods like spreading lotion laced with the antibiotic on the surface of my skin. They reopened my incisions and chased the bacteria. If we weren't careful, the bacteria would tunnel its way into my new lungs. I also developed HITT. Meaning I developed blood clots all over my body from gaining 63 pounds right after surgery. Then when they tried treating blood clots with Heparin...turns out I became allergic! Sooo there I was...open and clotted! It took about 3 years to completely heal from all of this. I lived in NC and then moved back to OKC and Norman. Tried to go back to OU with all this healing going on. Made the best friends while still healing, but I could breathe. It was some of the best times of my life. It's been 14 years. Doing incredible. February 12, 2019, I received a kidney transplant from one of my favorite people I met on my long transplant journey, my physical therapist. He would visit me every weekday during those 6 months of waiting. Our families became very close. Since we knew no one in NC, he and his wife became family right away. They both offered to give me a kidney, but ultimately and fittingly, Don was the perfect match. Not family...My Don! He's 6'3. I'm 5'3 so my surgeons said I basically got two kidneys for the price of one. It kind of sticks out of my lower left hip so I call it my baby. Organ donation is so surreal and so special. There are no words to express someone else giving you life. Anyway, I was well enough to move back to Oklahoma City right before the pandemic hit. I'm currently back in school at OU online and have one year to go to my bachelors. Time is not mine so I'm just enjoying my family and being back at school. They say I'm going to live a long time so I better hit the ground runnin’!! I still travel back and forth every three months to Chapel Hill for IV immunoglobulin. This is to keep away rejection as well as keeping my antibodies happy. Of course, I'm allergic to it so with a history of blood clots, infection, and anaphylaxis, I go see my peeps in the ICU. Due to Covid many things have changed. But where there is a will there is a way! Learning to navigate this new world can be difficult but can be done. I'm breathing and alive and that's all I can ask for!!! I am excited to share that I am now part of ROSE UP, a virtual fundraising event created and led by adults with cystic fibrosis. Now in its second year, the goal of ROSE UP is to raise $350,000 to help advance the Cystic Fibrosis Foundation’s mission – to find a cure for cystic fibrosis. Recognized globally, the CF Foundation has led the way in the fight against cystic fibrosis, fueling extraordinary medical and scientific progress. Working alongside the CF community, the Foundation has fostered the development of more than a dozen CF treatments – an unprecedented number in a short span of time -- and helped add decades of life for people with CF.    Despite this progress, many people with CF currently do not benefit from existing therapies. I am proud to be part of ROSE UP this year along with others in the CF community who dream of the day when CF stands for Cure Found.  Please join me! Take the first step by registering for ROSE UP, which promises to be a special day of fundraising and story sharing on social media on September 17, 2021. Thank you in advance. Whether you make a donation, raise awareness about CF by sharing your story and tagging #ROSEUPCF on social media, or do both – you are making a powerful difference for people living with CF.  Let’s ROSE UP together! #ROSEUPCF

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$840
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