My Path to Lung Transplant
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.
Getting the Transplant Call
My direct connection to the lung transplant program at Penn Medicine was my cell phone. I had it with me 24/7 so I wouldn’t miss “the call” when my new lungs became available.
Of course other people don’t stop calling during the wait so at first every time my cell rang I jumped to answer it. Wrong numbers in the middle of the night added to my edginess. It got better as time went on. I went out as much as I could, started new hobbies and lived each day to the fullest I was able. On days when the shortness of breath (SOB) was bad I would read a favorite book. On better days I’d give baking a whirl.
Some nights I just stared at the cell phone, willing it to ring. Patience was a virtue I never really mastered. Half of me was more than ready for my surgery, but the other half was still hoping for that magical intervention. Hearing that phone ring was the highest fear factor I ever knew.
On April 20 at 1:30 am, my cell phone started blaring the ringtone from “Avenue Q” and I recognized the caller ID: Hospital of the University of Pennsylvania (HUP). I needed to be at the HUP emergency room in about two hours.
For the first time in my life I actually understood the phrase “scared stiff.” I sat on the bedroom floor, petting my pup, unable to even think. I was a life-sized Barbie that my husband had to dress. I called my family and the friend who was going to puppy sit and got into the car with my bag. Do I remember doing any of it? Not a bit. So much for brave and daring!
Once we got to HUP, my husband and I were taken to the 10th floor where a flurry of tests made sure I was ready. After the adrenaline rush, I was waiting again. After about an hour, I decided this was going to be a no-go. I relaxed and drifted off for a snooze.
Nobody was more surprised than me when a few hours later I was prepped and ready in the OR. The entire team introduced themselves, joked with me, explained the process and told me we were just waiting for an “OK” call from the surgeon. The wall phone rang and it was lights out for me.
I woke up looking into a bright light above me. I thought: Either I didn’t make it and I am supposed to go into the light, or I did make it and my surgery is over. It took a few minutes, but I realized I was in the surgical intensive care unit with no idea of time, day or what happened.
It wasn’t long before the ventilator was removed. I wasn’t quite ready to get out of bed and hop onto a gurney, so I was lifted in a sling to move me between the gurney and the bed. It took a few minutes to realize that even though I was connected to some wires and tubes, I was actually breathing on my own. I hurt, but more importantly, I could breathe. I mean really breathe. Not purse-lipped, shallow, breathing and coughing breathing. Real honest breathing. The kind of breathing you do without even thinking about it. And no SOB.
My first meal at the start of this whole new life was…underwhelming. But it got better. After a day or so of watered down soup, a plate of fresh fruit tasted great and again, no SOB.
After my transplant surgery, I met the man I learned to love to hate. My physical trainer/rehab coordinator at first seemed like the devil himself. This man wanted me to get up and walk! I had drain tubes in place, had just had major surgery and started eating grown-up food again. Really?
Yes, really. With all my “medical stuff” on special hooks and with my oxygen mask in place, we set out to the hall with a walker like the Lone Ranger and Tonto. When I got to the end of the hall I suddenly became aware that although I was a bit shaky and had a twinge here and there, walking wasn’t that hard.
For the next 10 days while I was in the hospital, we walked a few times a day. Part of me wanted to yell at this man: “Don’t you know I’ve had an operation? See this medical stuff?” But another part wanted to thank him for helping be more like the person I was before. These were my first experiences with physical therapy, but not my last.
After 10 days I was turned loose and spent Friday night snuggled up at home taking it easy and enjoying that “No place like home” experience. Come Monday I was slated to start rehab so I was going to take advantage of this down time.
Bright and early on Monday and three days a week for the next several weeks, I walked the treadmill, did leg exercises, stretch bands and generally glared at the rehab ringleader, Jermaine. He convinced, cajoled and conned me into doing what was good for me. I even wore leg weights! He had a few partners in crime who kept track of my oxygen levels and blood pressure, upped my morale and even saved me from paying for parking.
After I completed rehab I continued walking outside when I could, and I joined the “Y” for the times when I couldn’t.
I know I would have never made it through my transplant experience and be where I am today without the help and understanding of my nurses who helped me to reach my greatest potential. And I want to give a shout out to the members of the HUP transplant team who never thought any question was either dumb or unimportant. The entire pulmonary rehabilitation group, as much as I was a bubbling ray of sunshine, helped me through it all and even turned me into a home gym rat who loves to work out. I honestly wish I could remember everyone’s name from the start of my journey until now. Although I may be a bit hazy on names, I do remember the kindness, understanding and care that helped guide me through a journey that in any other context would have taken my breath away.
There are lots of scary stories, but believe me when I say lung transplantation was the right decision for me and HUP was the right place.