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Tuesday, August 16, 2011

Getting the Transplant Call

Andrea had a bilateral lung transplant at Penn Medicine in 2010. She shares in her story in this, the second of two posts.

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.

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
nancy.blumenthal@uphs.upenn.edu

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