Community blog

Post by Liz Dolan

Navigating Between Pre and Post-Transplant Worlds

Growing up I always knew that I would eventually need a life-saving double lung transplant to survive due to my cystic fibrosis. It was an event that was always on the horizon; I saw it, but I was never sure when I would get there. In the meantime, I tried to live my life as normally as possible; but let’s be honest, how normal is your life when trying to breathe is like breathing through a drinking straw?

Fast forward to 2018 I found myself in end stage lung disease. I was suddenly confronted with the apparent horizon I always knew would happen. My CF team informed me that my lungs were at the stage where antibiotics were not treating the underlying infection and essentially my lungs were slowly giving out. I felt helpless, scared and started to wonder what it is I could have done or not done at all to improve my health or to stave off this moment in my life. I needed a lifesaving double lung transplant, or I wouldn’t see my thirties. I was unbelievably lucky that I only waited on the UNOS (United Network for Organ Sharing) just shy of sixty days. When the call came, I was in bed taking a nap, that’s all I seemed to be doing the last several months. I felt my iWatch vibrate and looked to see who was calling. It was a number I didn’t recognize but it said it was a Palo Alto phone number. At first, I was going to decline the call thinking it was someone calling to reschedule an appointment but something in me thought it could be the call for new lungs and I should answer it. That little voice in my head was right because it was! A surgeon on the other end of the line said there was a perfect pair of lungs for me, they weren’t certain it was going to happen, but they wanted me to get the hospital as soon as possible anyway. At first, I laughed and said, “Are you serious?” there was a pause and he said “Yes, I am very serious. How fast can you get here?” I immediately called my Mom at work and when I told her she screamed and said she would be right home, the conversation I had with my dad was pretty much identical to my mom’s, minus the screaming. I called my sister next, but she kept declining my call and she texted me that she was at the eye doctor and could she call me back. I emphatically told her she needed to call me ASAP. I’m usually not pushy so she knew something was amiss. She cried and screamed and said she was going to book a flight from New York City immediately. My brother works overseas, in Iraq, so getting hold of him was a bit trickier, but I left him a message to call me as soon as he could because I had big, exciting, news!  On my way to the hospital I called my Nonnie and Grandpa and the rest of my close family and friends. I was completely unprepared, I hadn’t packed a bag, I hadn’t purchased loose clothing for after surgery when I wouldn’t be able to move my sternum, I hadn’t written letters like I had wanted in case the worst happened and I didn’t survive. When I get anxious or nervous, I go very quiet and I prefer not to talk or be asked a lot of questions. My parents and I were at the hospital around 5:00PM and were taken to a room. The surgeon who had called me would be one of the surgeons performing the transplant and he said there was a twenty percent chance of the transplant taking place. The donor was still on life support and they weren’t sure the lungs would be viable once natural death had occurred. Between 5:30 PM to midnight we didn’t hear anything. I slept on and off and my parents worked remotely. Around midnight I had feeling this would be considered a “dry-run” and we would be sent home so I told my mom that we should go to iHop because we would need to drown our sorrows in pancakes. It was two in the morning when a nurse came in to let me know surgery was set for 6 AM, it was a god! I was stunned and the first thing I said was, “I guess we aren’t going for pancakes anymore.” I didn’t start to get nervous and cry until the nurses told me to say my goodbyes to my parents. That was when the waterworks started and it all finally became real. Even though you’re in a room filled with people talking and walking around preparing for surgery, I felt so terribly alone. I’m so thankful to the nurse who was in the operating room and held my hand and comforted me, I wish I knew her name. February 1, 2019 was the day I received my second chance at life thanks to the selfless decision my donor made to donate their organs when they left this world.

The first year after transplant is one of healing, regaining your strength and reconciling your old life with the new one that has been given to you.  I remember vividly walking for the first time with my new lungs. It was painful, due to just having my sternum cracked open and six chest tubes sticking out, but I remember being able to take a deep breath and not feeling dizzy or having to cough. When you’ve never experienced that in your entire life it is a weird and unsettling feeling. Recovery can be painful, for twelve weeks you can’t put any unnecessary weight on your upper body due to your sternum healing. You must change the way you sit up, get out of bed, shower and get dressed. Every morning I would wake up, take my vitals, test my blood sugar, weigh myself and write it all down in my binder that contained all my transplant information. I would wake up and immediately think that I need to get up and do my breathing treatments but all I had to do was take a handful of pills, talk about a time saver! Two times a week I went to pulmonary rehab to help regain strength and muscle I lost in the months leading up to transplant and during the hospital stay. I was doing so well that I was able to graduate from the program early.

It has been almost 14 months since my double lung transplant, and I find myself straddling the line between two worlds and two communities. While I have new and healthy lungs, my other organ systems still have cystic fibrosis and now, I am part of both the CF community and transplant community. There are times I feel uncertain how I can still connect with others in the CF community now that I am post-transplant. When I became a UNOS Ambassador I thought, in the back of my mind, “Am I leaving the CF community behind?”  I’m trying to balance the two and share my experiences pre and post-transplant. To ensure I am supporting the CF Foundation and community who have helped me through the trials and tribulations of life with a genetic and chronic condition, end stage lung disease, and transplant, I remain involved and volunteer with the CF Foundation’s Northern California Chapter, I’ve joined the CFF’s Tomorrow’s Leaders and have just recently become their Social Media Chair. Ultimately, I want to do my part in advocating for CF and Organ Donation in the best way I can because I wouldn’t be who I am without both communities.

Other posts by Liz Dolan

Share this post

Share on facebook
Share on twitter
Share on linkedin

Latest from blog

Patience stories and blog for Proteostasis_Therapeutics_Inc_biotech_company_cystic fibrosis

Community blog

Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.