A person stands between the lungs that changed his life.

My Life with Cystic Fibrosis

My name is Craig Konowal, and I was diagnosed with CF at birth. I was able to get an early diagnosis because I had an older sister who passed away from CF before I was born. The doctors knew to test me right away and, sure enough, I had it.

Growing up with cystic fibrosis

Growing up with CF is very difficult. That’s putting it mildly. For the most part my lungs functioned pretty well. I had to deal with a lot of side issues. GI problems were one of them. I also had a very hard time gaining weight, which is common with CF. Except, for me, it was harder than the average.

I eventually needed a stomach tube placed at the age of 15. It worked very well. I no longer have it, but to this day it is still a struggle to maintain weight. I also have chronic kidney stones, which are very, very painful.

More on this topic

When I was 16, I walked into a boxing gym and it changed my life. My lung function improved, and it also helped with weight. After about a year of training, I started boxing at a competitive level, which I did for about 6 years.

Going through a surgery gone wrong

Unfortunately, at the age of 23, I needed a port placed because my veins were shot due to the amount of PICC lines I had placed for antibiotic treatments. During the surgery, the surgeon made a mistake that changed my life forever. It was supposed to be an easy outpatient procedure, but that was not the case.

My lung was somehow punctured during the operation and I needed a chest tube placed. After the chest tube was placed, I was admitted to the hospital until my lung healed. Unfortunately, my chest tube suction wasn't turned on for about 8 hours, up until the shift change when my new nurse came into my room and noticed right away. But the damage had already been done. My lung did recover but I would never be the same after that.

About a month later I was back in the gym to train. I noticed after a few weeks that I just couldn’t keep up. It was devastating. My PFT’s were in the high 70’s-low 80’s before the port placement.

Needing a lung transplant

Over the next 3 years my lungs dropped into the 20’s, despite everything I had tried. Now, at 26 years old, I needed a life saving double lung transplant. Due to the rate my lungs were failing, the chances of even surviving long enough to get a call for lungs was very low. I had started my testing for a transplant, which is a very long and painful process. It could take up to six months or longer to receive a call for lungs. And it might not even be a match.

On the very last day of testing, my phone kept ringing and ringing. I noticed it was the hospital calling. I didn’t answer because I had just spent 7 days in a row there for 7 hours each day. What could they possible want from me? So I ignored the calls. Then I heard a text come through. It was my pulmonary doctor telling me to call ASAP. In that moment I knew what was happening. I was sick to my stomach.

I called back and they said there was a pair of lungs for me waiting, and they need a yes or no. What was I supposed to do? I wasn’t ready! I wasn't even officially placed on the list yet. So how could this be happening?

It took some convincing from my grandfather and my best friend to say yes. I called my doctor back and begged him to give me some info. He told me there was a young man who is passing away and his mother somehow knew about me and decided to directly donate his lungs to me. Once I heard that I couldn’t say no! I have seen what losing a child does to a mother, and I wouldn’t let her son pass away for nothing. If a piece of him could live on through me I will do it.

My lung transplant experience

I went to the hospital and started the process. Miraculously, this man and I were a complete match. This was a direct donation that was a match. This was unheard of! It has never happened before! Luck just doesn’t justify it.

My whole family and best friends were at the hospital with me. I eventually was wheeled into the operating room and was put to sleep and woke up a few days later. I had complications, but I made it. Looks like all the training finally paid off, because it had saved my life because of how strong my heart was.

I have just celebrated my 30th birthday, and I am engaged to the love of my life. I had met my future wife about six months post-transplant, which is an amazing story of its own. I am so grateful to be here - finally being able to breathe free.

Have you or your loved one with cystic fibrosis had a lung transplant? Share your experience with us.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.