Hello all, I’m Shannon! I have Cystic Fibrosis. I was diagnosed with CF at 5 months old with a positive sweat test. I was initially evaluated for a double lung transplant at Barnes-Jewish Hospital in St. Louis, MO in 2016 after a pretty decent decline in lung function. I wasn’t quite ready to be listed at that time. I have done all the evaluation testing again in August 2023 to stay up to date. I’m still holding steady and not ready to be listed just yet. I am currently followed by Barnes to stay up to date with guidelines of all the testing needed for lung transplant. By staying up to date, it will help us not to backtrack with the testing side of things if I were to have a drastic decline and need to get listed ASAP. No matter what, the goal is to use up my natural crappy lungs for all they have to give before getting a transplant.

We partnered with COTA for assistance with transplant related expenses, such as all of the relocation expenses, medical expenses (appointment copays, co insurance, prescription copays, etc), food expenses, transportation expenses, parking at the hospital as well as keeping our TN house a float (paying all the regular bills and doing the regular house maintenance things). There’s a lot that goes into the process of transplant outside of the actual surgery. When people ask what they can do to help with my transplant journey, donating to my COTA fund is what you can do for the time being. I will have A LOT of hard work ahead of me after transplant. I will also be very high risk for getting infections with all the anti-rejection meds I will be on, so I can’t take any chances with visitors. It’s better to wait to have visitors much later in the recovery process, as much as I would love to see everyone, it just would not be safe. The first year after transplant it a lot of work.

Here is a little synopsis of what will happen when I’m OFFICIALLY listed for lung transplant: When I am officially put on the list for new lungs, I will relocate to Kansas City and stay with family so that I am able to get to Barnes in St. Louis within the allowed distance of 4 hours. My husband will stay in Tennessee working while I am waiting to get the call. When I get THE CALL I will head to Barnes and my husband will jump in the car and start driving to Barnes as well. We are about a 7.5 hour drive from Barnes where we live in Knoxville. The hope is that he would get there before I went back for surgery but that’s not something we can know. When I’m released from the hospital after transplant we will stay in St. Louis in a rented apartment for a minimum of 3 months, possibly 6 or more months depending on my progress. I will have many appointments every day of the week (Monday-Friday). I will have regular lab work, chest x-rays, daily rehab appointments and more.

Thank you for all of your love, support and all donations. You have no idea how much it is appreciated!