Got Lungs… Got Busy

by Joanne Schum

Looking at my calendar I see I am flying two times in November– once to Florida, the other to North Carolina. But first I have to get my agenda items together for “Lungs for Life” board meeting in Rochester. I am on the awareness committee and need to get promotion ideas together. Meanwhile I gather my notes for another board meeting that comes up first. I quick make a lunch date with a new friend who has Cystic Fibrosis also. We only learned via email we live five minutes from one another. Can’t sit still for too long though I am the athlete recruiter and secretary of the Upstate New York Transplant Games Team and a big promotional party I’ve helped plan my draw many attendees. Thank goodness I only work twice a week for Executive Resource Center– a career counseling agency, because I also need to write a speech for Donor Sabbath Day at my church. My sister Mary Lou has offered to help and this will be her first speaking engagement since her transplant. The phone rings, “Can you speak next week to a high school on your transplant?” Of course I can! Speaking is one of my favorite projects I am involved with.

I take a moment to reflect on this crazy hectic schedule… is this for real? Am I dreaming? Is this me? How could someone who was tethered to oxygen, required three hours a day of chest physiotherapy (pounding on my chest) and two hours a day of nebulizing able to do what was on my calendar and even think they could accomplish it? I could clearly recall the days where mention of travel, movement, speaking in public, a hectic schedule would send chills through me– as I could not complete these tasks. How could this be possible? It’s possible and yes it’s a miracle.

All these projects were made possible by my receiving a bilateral lung transplant September 12, 1997. The changes, opportunities and energy my transplant gave me were not realized or even dreamed of by myself pre transplant.

Born with Cystic Fibrosis in 1963, I was the youngest of seven siblings which included by sister, born in 1954 who also had CF. We were both fortunate to achieve in life what we had up to this point. But the progressive scarring of my lungs caught up with me. I dreamed of what I would do post transplant, which included; walking, working and maybe owning a quilting shop. But strange things happen, desires, ambitions move on and what totally took me by surprise was my desire for adventure, travel and volunteering.

Due to a severe episode of hemoptysis in the mid 1980’s on an airplane, my lungs had forced me to stay grounded and no longer fly. With time, travel was given up entirely, as I always caught an infection with travel. When I took my first flight after transplant and found myself both fascinated and exhilarated, I knew I would fly a lot– and I do.

Being a shy, quiet person my entire life, with no desire for the limelight, audience or attracting attention, the desire to speak in public was truly unprecedented. The great feeling I get from speaking to groups of people about organ donation is one that builds my self-confidence to this day. Adventure—yes I dreamed many days in my pre transplant life o doing something remarkable like take a long bike ride, run a short distance, or do an Irish jig. But it seemed a lifetime away, if not impossible. Once I got a taste of adventure after lung transplant in the form of driving a motor bike, I was addicted. Quickly I was involved in everything offered to me. Run a 5K race– heck yes, where is the start line. Plow snow on an International Farmall 130 Tractor– bring on more snow for me. Swim in a pool—do I ever have to get out? Play volleyball with our transplant team– no problem I never liked team sports in my life but seems like a great opportunity now. How about soaring in a sailplane? This is for real—me who was scared of flying for over ten years– now get in an engineless plane with a pilot and soar over the valleys and hills? Why yes, where is my plane and can I do this often?

What a difference lungs can make for a person. What a gift I got from a very generous family, who was suffering, but knew they could stop the suffering of someone else. Tears stream down my face when I think of my donor. I can imagine the smile they have seeing me achieve as I never had, and will continue to do so for many healthy years.

The phone rings again, “If you can do more speaking engagements for organ donation in the next two weeks, they are yours”, I grab them as I always have time and always have the breath for more on my calendar.

Joanne Schum, 38
Cystic Fibrosis Double Lung Transplant, September 12, 1997
University of North Carolina Hospitals Chapel Hill, Chapel Hill, North Carolina