Hello, my name is Jordan Magsamen and I am 30 years old. I was diagnosed with Cystic Fibrosis when I was 17 months old. I truly never thought I would see the age of 30. When I was diagnosed all those years ago, the life expectancy for someone born with CF was 29 years old. I am grateful and truly so glad I beat those odds. Sometimes I don't even think this is real life and I simply cannot fathom how that is possible. People who have supported me and the CF Foundation for years on end, are WHY that is possible. I am so grateful for Trikafta and all of the advancements in medicine. It has improved my lung health so much. Even though my lungs are the healthiest they have ever been, the rest of my body is struggling. My whole life I was mentally preparing for a lung transplant. In 2024, I started the process of Transplant Evaluation for a Kidney and Liver Transplant. Unfortunately, my kidney disease has progressed rapidly and I am now in Stage 5 Kidney Failure. I have been approved for Kidney Transplant as of December 2024. Now, we wait for the Liver Transplant Team to evaluate my case and get approval for both.

It wouldn’t be my life if things were simple, cut and dry. I was told that I am in a tough spot because my liver has not decompensated.  Even though I have liver cirrhosis due to CF, my liver has compensated, and my liver labs are not horrible. After speaking with the transplant team, it was discussed that a single deceased donor is my best option. Since I am young it would not be ideal to have two separate donors due to the risk of increased rejection. This is a whole new world to me and my family. You don’t realize how everything is connected to your kidneys. This was a hard pill to swallow considering I was born with a genetic lung disease. Now I must deal with another obstacle of challenges. I will get through this just like I always have. Everyone has always pushed me to be strong and do everything that was needed to survive. I am so happy to say I am livin’ life with my family, puppies and friends!  I am one lucky and, also unlucky woman. With today’s research and break throughs in treatments and drugs, I am able to breathe a little bit easier. I like to volunteer for the CF Foundation and participate in great events, just like Feastival to raise funds for more research. Being a CF advocate, raising awareness and funds, to hopefully change my life and that of others with CF, is important to me. We still have a lot of work to do, but we are well on our way to life-changing treatments and hopefully, a cure! Please join me on this journey and make a difference. We will not stop until CF stands for Cure Found! ❤️