Tuesday, August 9, 2011
My Path to Lung Transplant
Andrea had a bilateral lung transplant at Penn Medicine in 2010
. She shares in her story in this, the first of two posts.
My name is Andrea and I’ve had a bilateral lung transplant. I know that sounds like something that would normally be said during the start of an AA meeting, but I also think it’s the best way to start my story. I don’t hide the fact that I’ve had both lungs transplanted. I want to spread awareness, understanding and honoring those whose losses have made it possible for people like me to live.
By way of background, I was your typical type “A” person, working 40-plus hours a week in the advertising field, housekeeping, gardening and hitting the ground running on the weekends with family and friends. That was before I was slowed down by my breathing. I love roller coasters and feeling that rush when the first drop takes my breath away. Little did I know that feeling was going to become my constant companion.
I was a smoker and I knew full well the hazards that came with the habit. Of course I swore I would quit if I ever had a problem. At first I attributed my shortness of breath to weather, weight or allergies: anything but being sick. So what if I had to stop at the top of the stairs with the clothes basket? I wasn’t 18 anymore, but I was only 40.
I managed to fool myself into thinking nothing was wrong for quite a while. Then I ended up in the hospital weighing 102 pounds. My oxygen levels were at 77 percent on room air and I had advanced pneumonia. It was hard to deny I had an advancing lung condition: a polite way of saying emphysema.
After seven days, I was released from the hospital with inhalers, a nebulizer and a local pulmonologist. My local pulmonologist told me I needed to be evaluated for a lung transplant. Once I got over the initial shock I started digging on the Internet for every scrap of information I could find on chronic obstructive pulmonary disease, COPD, and all of its components and treatments.
Honestly, I think my real reason for digging for information was to prove I was in good “breathing” health and there was some magical way to make this problem go away. I was already on a number of medications and I knew there had to be a magic cure for feeling better. I found my mystical answer, but it wasn’t even close to what I was expecting!
I read and re-read everything, trying to make sure I understood my options. I could hardly walk up a flight of steps; I needed a shopping cart to pick up three items at the grocery store; it took all day to clean the living room floor. But the best thing for me to prepare for lung transplant was exercise?
I thought this was some sort of crack pot idea, but it turns out the better my physical condition going into lung transplant surgery, the quicker and better I would recover after the surgery. After a lengthy chat with my doctor, I was cleared for the COPD version of the Richards Simmons workout.
I learned not to dread that awful treadmill. I enjoyed watching cooking shows while riding the stationary bike. While I was on the waiting list for a bi-lateral lung transplant I spent three days a week walking less than half a mile on the lowest setting on the treadmill. It didn’t matter if I moved an inch or a foot, it only mattered that I move. I absolutely hated admitting it, but I felt better and seemed to have less shortness of breath (SOB). I kept up this trend, plus using arm weights during the nearly two years that I waited for my transplant. Even though my lungs were weak I worked to maintain the strength in all my other muscles.
The time between being listed for a transplant and having the surgery seemed like an eternity. I didn’t really grasp how the United Network for Organ Sharing (UNOS) allocation worked at first. I thought whatever number I got, when it came up it was my turn. Eventually I came to understand the process. The UNOS score can change faster than the weather. Everything depended on how many people are listed, changes in my health status, location and so much more. I wanted a confirmed place in line, but lung allocation doesn’t work like buying concert tickets. The waiting really is the hardest part.
Share your story:
Patients who have a story to share, a message for other patients and their families and a maybe a photograph or two showing off their new lung(s) in action, can send their information to:
Director of Clinical Practice & Senior Nurse Practitioner
Penn Lung Transplant Program
3400 Spruce Street
Philadelphia, PA 19104