Little did I know when I first shared my cystic fibrosis story in March 2015 that everything would begin to come full circle less than one month later.
At that time, I’d been a patient at Cincinnati Children’s for 20 years and was listed for an adult double lung transplant the last four of those years. It’d been just over two weeks since I got engaged to marry the love of my life, Ty, and I was admitted to the hospital for IV antibiotics. Our life together returned to the typical treatment routine that my fiancé and I had become accustomed to for so many months before he proposed. We spent most of our days on the Cystic Fibrosis/Pulmonary floor until Wednesday, April 15 – everything changed for us that day.
For four years I had been a caterpillar waiting on my beautiful transformation. And on that day it happened. I became a butterfly.
Two of the most amazing nurse practitioners woke me up early that morning with excited tears in their eyes and told me that the Cleveland Clinic, one of the two places where I was listed for transplant, had found a match. It was finally happening. I was surprisingly the calmest person in the room as I made the most important phone calls of my life to share the news with all of my loved ones.
Ty and I patiently waited for the Cleveland Clinic’s transport team to arrive. They chose to use a medical helicopter to get us to the hospital as fast as possible because lungs can only survive outside the body for 4 to 6 hours. Unfortunately at the time my mom had pneumonia, so she and my dad had to drive separately to meet us there, but Ty would be by my side for the entire flight.
Local 12 reporter Brad Johansen came to interview us before the transport, then we made our way up to the helipad at Burnet Campus for takeoff. I had never ridden in a helicopter before, and at first I was fine, but my nerves got the best of me once we were in the air. I was so happy and grateful to have my fiancé Ty there with me for the experience.
There’s a lot of uncertainty involved when facing a lung transplant. There’s no way of knowing how long your wait will be after you register for a match. We all had been anticipating this transplant for years and it happened at the perfect time. I was only using 15 percent of my lungs and my body was failing me. Daily activities were almost impossible and I spent most of my days in bed, as I had no energy and was in too much pain to do anything else.
Even after a donor match is found, the odds of receiving a transplant are still uncertain. Most patients experience what’s known as a “dry run,” or, in other words, a false alarm. It means that after identifying a match, surgeons have examined the condition of the lungs and determined them to be unsuitable for transplant. Fortunately, the lungs for me were good and I was scheduled to go into surgery at 6 pm.
The time came quickly and I hugged my family and fiancé bye, not realizing this could be the last time I see them. This didn’t hit me until I was inside the operating room holding the hand of a nurse I had never met. We cried together and I told her my fears. The last thing I remember is joking with my team of surgeons, saying, “You have to take care of me, I have a wedding to plan!”
Surgery began at 8 pm that Wednesday and ended at 4 am on April 16 – my fiancé’s birthday! The only complications to surgery were from removing my severely deteriorated lungs. The thick, sticky mucus my body creates as a result of my cystic fibrosis (CF) had trapped my lungs against the walls of my chest. I expected to wake up from transplant taking deep breaths and finally feeling able to breathe, but I was wrong.
When I woke up, I thought I was dying. I couldn’t fathom how someone could be in so much pain and still be alive. No one could have prepared me for the pain I would endure. But my wonderful family, fiancé and friends who were all by my side constantly reassured me it would get better – and it did! I had a total of six chest tubes and two were pulled out within the first few hours. The days following were harder than expected. I basically had to re-teach my body how to function again. Walking was hard, but so rewarding. I could finally walk and breathe, even if breathing was still a little difficult.
I stayed in the hospital for 16 days until the last four chest tubes were removed. At that point, doctors let me leave the hospital to go to my temporary home – a nearby condo in Cleveland where I lived for four weeks so I could be closely monitored. A lot of nerves were cut during surgery, and the incision pain was often accompanied by a feeling like an elephant was sitting on my chest, but that got better too. On the day I was finally able to go back to my home in Manchester, the transplant team informed me that a bronchoscopy found slight rejection in my lungs. I was put on very high doses of steroids and luckily still able to go home.
I returned to Cleveland just three weeks later for a follow up bronchoscopy. Instead of rejection, we found out that my prayers had been answered. I was, and still am, rejection free. I’m 5 months post-transplant and to this day the hardest part emotionally has been knowing that someone lost their life and it saved mine. Now while I celebrate my life’s milestones and plan my wedding, another family is missing their loved one.
If you’re waiting for transplant, hold onto hope. Keep your faith and your positivity. The transplant process is hard. It’s challenging both physically and mentally. But giving up is never an option. Life is beautiful and getting a second chance to explore it and create your own adventures is the most amazing gift you could ever be given. You can do it. Love life and life will always love you back.