Hi my name is Devoney, I am 28 and have been living with CF my whole life! Nov. 28, 2018 I received a double lung transplant! It took 2 years to get on the list. I was on the list for 5 months, had 2 dry runs, then I finally received THE CALL! It hasn't been smooth sailing. Since the surgery I developed a bacteria called B. Cepacia, so I was reopened to clean out and debri all wires from my sternum. I remained open with a wound vac for a month. I was finally closed Feb 25th! While in the hospital I learned that I had also developed PTLD, a type of lymphoma that can happen because of EBV mismatch with my donor. I had to start treatment for that as well with 4 treatments of Rituxan. With all that being said, I am so grateful for my donor because I am finally able to breathe!!
For years I have taken thousands of pills, hours of inhaled treatments, had many hospital stays, and have done hours of IV antibiotics. I would get infections very frequently, because I was becoming sicker. My lung function was about 20% before transplant and I was having to use oxygen when walking around.
Although I received these new lungs, I am still going to have to take pills for the rest of my life so my body doesn't reject my new lungs. CF is still in my other organs like my pancreas, GI, etc. And eventually it will take over these lungs. A transplant is not a cure, it just helps prolong life. That's why we need to find a cure!
Please help us reach our fundraising goal! No donation is too small! Thank you so much for your support!
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF -- join our team today!
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.