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 evaluated for a double lung transplant at Barnes Jewish Hospital in St. Louis, MO in 2016 but wasn’t quite ready to be listed. 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 them to stay up to date with guidelines of all the testing needed for transplant. The goal is to use up my natural crappy lungs for all they have to give before needing/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 and keeping the TN house a float (paying all the regular bills and doing the regular maintenance) as well. There’s a lot that goes into it.  So the more money raised the better!!! 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 not be up for visitors for a long while. I will have A LOT of hard work ahead of me after transplant. I will also be high risk for getting infections with all the anti-rejection meds I will be on so I can’t take any chances. It’s better to wait to have visitors as much as I would love to see everyone, it’s just not safe. The first year after transplant it a lot of work.

We will need to relocate to St. Louis for at least 3 months after transplant for all of my daily rehab appointments. Doing so, we have to maintain our house in TN as well as an apartment in St. Louis, to include living expenses while in St. Louis. So we need all the help we can get.

Thank you for your love and support.  It is greatly appreciated!