When Erin was feeling defeated prior to transplant, and her lung function dropped into the 7-9% range, or her weight dipped down another 1/2 pound, we would remind her that it was ‘just a number’. When you are fighting for your life, anything below 25% lung function makes breathing extremely challenging and painful; and after years of living with CF, weight has been a constant struggle. Needing to eat to stay alive, especially when you are nauseous, is beyond hard. So, while the numbers were scary and a sometimes a sign that things were getting worse, they were truly just a number, because those numbers never told the whole story. Numbers can’t define personality, grit, or resilience, all of which Erin has proven she has an abundance of.
Fast forward to three weeks post-transplant, and while the message is the same, the numbers have dramatically changed. Erin’s first official lung function test post-transplant was 63%!!! Her appetite is also coming back along with her love for food. But yes, the message is still the same, ‘it is just a number’. Life with a chronic disease, even during the best of times, has its ups and downs on a daily basis, and you learn to cherish the ‘ups’ and not focus on the ‘downs’. That being said, the IDIOT neighbor who burnt their food, setting off the fire alarm and summoning the fire department, requiring Erin to walk down 3 flights of stair on Wednesday, is not our friend!
We continue to take everything one day, one hour, one moment at a time, focusing on getting stronger and breathing deeper. And while the numbers person in me wants to shout from the rooftop amazing numbers like 1) 63% lung function!! 2) discharged from the hospital in 16 days, 3) anticipated return home in under 7 weeks, 4) 1200 ft walking, 5) 13 minutes of sustained walking; it all boils down to 1 extra chance at life. So, no matter how short or how long that chance is, we will continue to work on cherishing all of the ‘ups’ and fighting through all of the ‘downs’. Thank you for your continued support along the way!
You are a gifted writer. Thank you for the update. ♥️ 🙏🏻
Way to go Erin.