Hi all, my name is Tyler Smith, I am a 28 year old Cystic Fibrosis patient and a surviving double lung transplant recipient. There are many of you who have followed my story from my early childhood all the way up until now, there are many who have heard my story, but may have never met me in person. I was diagnosed with Cystic Fibrosis at 6 weeks old. I was a fairly healthy child growing up and once I got older CF started to make its presence more known. Throughout high school I was usually admitted to Johns Hopkins Hospital for CF "tune ups" which involved PICC lines and IV antibiotics along with a strict regiment of chest physical therapy and breathing exercises.
Once I was in my final stages of community college my health began to decline more noticeably. In 2018, I had plans to marry my high school sweetheart in September, but in April, that dream became less in view even though it was only 5 months away. My CF team at Hopkins decided it was time for me to list for a double lung transplant as soon as possible and either push our wedding off or move it up. We planned to move it up to June and list immediately after our honeymoon.
The week before our wedding, at our bridal shower, I was struggling to breathe, struggling to live and struggling to find my fight I was always so proud of. I had to be admitted to Hopkins immediately for antibiotics. After a few days of being in Hopkins my health rapidly declined to a lung function of 16%. Our wedding day had to be pushed forward even more to have a bedside ceremony if possible, but the morning we were supposed to have our wedding, I was alerted a set of lungs were available to me and seemed to be "the perfect match". I was on my death bed and this was my only way out at the age of 23 years old.
Thankfully, my surgery was successful and I was home breathing on my own in ONE WEEK! 4 months later I married my best friend and we had the wedding we always dreamed of. A little over a year later I was back to working full time and in 2019 we bought our first home. Then in June of 2021 we welcomed our first child through In Vitro Fertilization (IVF) after years of being told I would never be able to be a natural father due to CF infertility. Also in 2021 I was able to meet the amazing parents of my lung donor who are the kindest hearted people I have ever met.
None of these opportunities I've had would be capable without the help from every single donor and donation made to the Cystic Fibrosis Foundation which have led to medical advancements which allow double lung transplant patients to live longer lives post surgery as well as medications such as Trikafta.
Thank you all for all that you do and taking the time to read a little about my story!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I walk for them. Will you join me and support my fundraising goal?
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We've come so far, but there's still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.
Please support me!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.