COTA for Shannon M

Our Story

Hello all, I’m Shannon! I have Cystic Fibrosis. I was diagnosed with CF at 5 months old with a positive sweat test. I have done all of the lung transplant evaluation testing to be evaluated. I am not ready to be listed for transplant quite yet. I’m holding steady at the moment. I am currently followed by Barnes-Jewish to stay up to date with the guidelines of all the testing needed for lung transplant. By staying up to date, if I were to have a drastic decline and need to get listed ASAP, I won’t need to backtrack with most of the testing side of things. No matter what, the goal is to use up my natural crappy lungs for all they have to give before getting a lung transplant.

Financial side of lung transplant: The average lung transplant surgery and follow-up care can cost more than $1.4 MILLION. Thanks to improved health insurance coverage, few patients are required to pay this full amount. BUT insurance does NOT cover everything. The type of medical insurance you have makes a HUGE difference of how well things are covered for all transplant associated related costs. I’ll list a few of the related costs to give you an idea of what they entail…the transplant surgery itself, post surgery inpatient care (ICU and then a step down unit), post surgery care once I’m release from the hospital which includes…multiple days of blood work a week, multiple chest x-rays, 5 days a week of pulmonary rehab, lung function testing, doctor appointments in the transplant clinic, multiple bronchoscopies, all of the appointment copays, anti-rejection medicine copays, plus the meds I am take on a regular basis before transplant copays. Mind you, some of them will be stopped because I will have new lungs and won’t (well shouldn’t) need to do all 5 of my inhaled medicines.

Living expenses side of things: Of course there is the cost of living in an apartment, VRBO or anirbnb after I am released from the hospital. I will have to stay in St. Louis for my post surgery care until I’m released to go back home. This will be a minimum of 3 months but could be up to 9 month or even a year. It all depends on how well I’m healing and how fast I progress and build my strength back up. Some of the expenses while living in St. Louis are the following…food expenses, transportation expenses, gas for all the back and forth to the hospital everyday, parking at the hospital and other random every day necessities.

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 taking. My immune system will basically be non existent from all of the anti-rejection meds I will be on. I will be VERY limited on visitors. The first year after transplant it A LOT of hard work…that’s an understatement.

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