COLLEEN ADAMSON
The transplant gave me a chance to have a better life.
Organ Transplant Stories
Transplant: Three and a half years later–Winter 2002
BY COLLEEN ADAMSON
I wrote my first article on my transplant for the Winter 1999 issue of CF Roundtable. Here is a recap and an update of how I’m doing:
I had my bilateral lung transplant about three-and-a-half years ago – I’ll never forget the date: July 3, 1998. I have come a very long way since then. I was barely able to walk when I had my transplant, after being virtually bedridden for six months on a ventilator. I hadn’t really talked or eaten (orally) or walked in all that time. I had been on oxygen, and I couldn’t even walk across the room without getting completely out of breath.
I barely recognize that person now, for now I can walk all over the place without getting 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”, and now I weigh in at a healthy 125 lbs. It is unbelievable to me sometimes, and I am so very grateful for every minute. Since I don’t have CF in the lungs anymore, it is easy to forget that I still have CF, since 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 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. For 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 that 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 now 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 see other (non-CF) transplant recipients that have difficulty remembering to take their medications, and have lots of side effects from the medications. I often wonder if that is because they had been healthy most of their lives, so they aren’t used to this type of lifestyle. I don’t think I’ve ever forgotten to take my medication, because I’ve been taking medications my entire life, so it’s always been a part of what I do everyday. I also think my body is accustomed to having medication in its system, so medication side effects are minimal. That’s my theory anyway.
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 with this process like I was helped. The day before my transplant, a wonderful person by the name of Tom talked to me about his experience with transplant (he also had CF). 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 will continue to do this for others.
I’ve been doing lots more fun stuff now that I have more energy – things like going on vacations (without lugging around a lot of machines and equipment) where we do a lot of walking around and site seeing, visiting out-of-town friends, going to museums and shows and sporting events here in our nation’s capital and elsewhere, going to Barry Manilow concerts and screaming my lungs out (I’ve done this several times since the transplant believe it or not), shopping-shopping-shopping, and just basically trying to get as much out of life as I can, and to do the things that I wasn’t able to do before.
I take walks, even going up hills, and we now have a treadmill that I use (although not as often as I should!). 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 that others will have a second chance at life like 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 that 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 that 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 Fairfax Hospital, Virginia.
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 don’t sweat the small stuff.
I welcome any comments or questions you may have about my transplant experiences.
Colleen is 34. She is a Director of USACFA. Her email address is: cadamson@usacfa.org