Inova Lung — Patient Resources — Patient Stories — Colleen

Colleen's Story

I will never forget the date of my bilateral lung transplant: July 3, 1998. I have come a very long way since then. I was barely able to walk when I had my transplant because I had been virtually bedridden for six months on a ventilator. In that time, I had not really talked or eaten (orally) or walked. I couldn't even walk across the room without getting completely out of breath.

I barely recognize that person now, because now I can walk all over the place without becoming short of breath. You'd never know to look at me just how far I have come. People look at me and see a healthy woman. They are shocked when I tell them that I have had a lung transplant. I never thought I would live to see the day when people thought I was healthy. But that is the purpose of transplant -- to be given a chance at what a lot of people take for granted: a healthy life.

When I had the transplant, I was a fragile 95 lbs, at 5'4". Now, I weigh a healthy 125 lbs. It is unbelievable to me sometimes, and I am so very grateful for every minute.

Because I don't have cystic fibrosis in the lungs anymore, it is easy to forget that I still have CF. I don't do any time-consuming breathing treatments anymore, and I don't get sick nearly as often as I did before the transplant. I find myself saying that I "had" CF, even though I still have it. My stomach and sinuses remind me of this every once in a while!

However, living (most of the time) like I don't have CF is the best gift I could have received, and I cherish this gift every day of my life. I get up every day, and thank God and say a prayer for my donor family, because I can get up and go about my day like a "normal" healthy person. There were days when I didn't think I'd ever experience a "normal" day again. I now love doing little everyday things like grocery shopping, laundry, cooking, reading, driving my car -- things many people take for granted. Of course, when I mention this to my friends, they offer to bring me their laundry! I don't like it that much!

It hasn't been all fun and games, of course. Any transplant recipient can tell you that. I had three or four rejections the first year after my transplant. Those are scary, but you and your doctor deal with them as they come along, and you hope they are just temporary setbacks. I now have steroid-induced diabetes, so I have to take insulin injections and watch what I eat. My hands shake, too. You should see my handwriting! It's terrible!

I have to check my blood pressure, temperature, spirometry (lung capacity), oxygen saturation, weight and blood sugars twice a day. I take a relatively large amount of drugs to prevent rejection and to counteract the effects of some of the medications, like prednisone. But I got used to this very quickly. I hardly even think about it anymore. It's just a part of my daily routine. In my opinion, people with CF have an advantage here (yes, I said advantage!). Since we are so used to taking lots of medications, I think it's relatively easy for us to get into the transplant medication-taking routine.

I now try to help others with their transplant decisions and experiences. I mentor the pre-transplant patients, telling my story and giving them advice if I can. I need and want to do this. I try to help others go through the process as I was helped.

The day before my transplant, a wonderful person named Tom spoke to me about his experience with transplant. He told me about the operation and what to expect afterwards. He also talked about how great his life was again, and how I shouldn't be scared, because my life was going to be wonderful after transplant. I cannot describe in mere words how much that meeting with Tom meant to me. He alleviated all of my fears and doubts, and really prepared me for the transplant experience. I hope I have been able to and can continue to do this for others.

I am able to do more things that I find fun now that I have more energy. I take vacations where we do a lot of walking and sightseeing, visit out-of-town friends, go to museums, shows, shopping and sporting events, and I have even been to Barry Manilow concerts where I screamed my lungs out. I plan on taking piano lessons soon, too. I never had the time or the energy for that between working and breathing treatments. Additionally, I am planning to take golf lessons in the spring, something I've never done before. I also just signed up to be an advocate for organ donation by speaking to groups about my transplant experience. This is one way I can give back and hopefully ensure others will have a second chance at life as I did.

I work full time as a cost analyst for the Navy, and I walk around the office and climb the stairs like I never could before. I have more energy, and I am happier than I have ever been. I recently received a promotion, and the emotions I felt when I heard the news were completely unexpected. I don't get too emotional about a lot of things, but I kept thinking of those many days when I thought and even expected I would never work again. And now here I am, having come back from an almost certain death, fighting with everything I had to get my life and my career back. It wasn't easy, but I did it, with perseverance and with the love and support of family, friends, coworkers, and the lung transplant team at Inova Fairfax Hospital in Falls Church, VA.

Life is all about taking chances. Maybe transplantation isn't for every person, and it doesn't work well for everyone, but I've been extremely lucky. The transplant gave me a chance to have a better life, not to mention a longer one, and I'd do it all over again in a second. The road I took was not an easy one, but it has taught me to live each day to its fullest, enjoy every minute, and not to sweat the small stuff.

This article originally was published in CF Roundtable, Winter 2002, and appears here with permission of USACFA, Inc. and CF Roundtable.