Stories of hope

On a daily basis there are behaviors we have and actions we perform without really thinking about how life would be without them. Blinking, walking, talking and breathing are just a few examples. My ability to breathe was compromised in 2002.

It was a rainy, Labor Day weekend. I had gone to get the mail and by the time I got to the mailbox I was having trouble breathing. Not long after, I could barely breathe at all. My problem continued and my doctors decided that asthma was to blame. I began receiving steroids and other medicines to treat my condition but I kept getting worse and worse. No matter what they tried, my lung function never improved.

A few weeks later I was diagnosed with Bronchiolitis Obliterans, a rare and life-threatening form of non-reversible obstructive lung disease where the small branches in your airway are shrunk and narrowed by scar tissue or inflammation. Because it was such a rare disease, there were only two doctors in the US  – in California or Cleveland – who could treat it. I was listed for a double lung transplant in late September 2004 at the Cleveland Clinic.

I knew the risk associated with lung transplant, and decided to move forward not to make my life easier, but because I wanted a chance to live. I was newly married and had two sons in their 20s. It was hard for my boys to see me getting sicker over time but they still made sure to let me know that they cared. My youngest son, Zach, was living in Athens, OH attending classes at Ohio University, but he would still come home on breaks and say “Mom- can you do my laundry?”  That was a big part of what kept me strong through everything. They made me feel like nothing had changed.

I started my new life with my new lungs almost exactly six months after being listed. It was March 23, 2005 when I received my call and transplant. As it turns out, my call came just in the nick of time, as my lung function was down to a mere 15 percent. It was a six-hour surgery and my hospital stay lasted until the end of May. During this time, I was pumped full of steroids to help my new lungs function. As a result, all of the muscles deteriorated in my legs and I had to learn how to walk again. The recovery was not easy by any means, but I knew that with each new breath that I was slowly, but surely, getting my life back.

Within six months of my surgery I was fully functioning with my new lungs. In August, I was able to throw a surprise party for my 80-year-old mother, whose birthday I had missed when I was in the hospital.

Even though I was successfully breathing on my own, I spent the first two years after my transplant terrified at the thought of dying. During that time I met a man at rehab who was a Life line of Ohio volunteer. He gave me my first Donate Life green bracelet and inspired me to begin volunteering. After meeting him and many more inspiring people, I realized I was wasting time. I stopped worrying so much about the risks and began concentrating on my future. I was glad to be able to give back.

Although it took me over a year and a half, I also mustered up the courage to write my donor family. For the longest time I just didn’t know what to say, but I as I regained my inner strength, the words came to me. We had the opportunity to connect a year after I initially wrote my letter. My family and I went to Cincinnati and I met my donor’s daughter. I was surprised to learn my donor had been a heavy smoker.

To this day, I stay connected with my donor’s family through social media and I am hoping that we can reconnect again soon. Personally, I have been a registered donor for as long as I can remember, but I now realize that just because you think you can’t be a donor, doesn’t make it true. I am the perfect example – although my donor was a heavy smoker, I am still able to continue my life and look forward to the future because of her selfless gift. I make sure to keep moving and exercising so that I can keep my lungs as strong as possible. In the last five years, I have been able to watch my boys graduate from college and I have been able to travel with my family. Now all I need to do is become a grandmother!

Survival rates for lung transplant patients decrease with every year. So, as I see it, I have already beaten the odds. I want to do as much as I can to thrive with the time I have left. My husband and I look back now and laugh. We say that if we can get through this, we can get through anything!