New Lungs, Hepatitis, and Warranty Work: My First Lungiversary
I once told a friend that my two biggest fears were a lung transplant and snakes. At least now I only have to worry about the snakes.
A year ago today I was in a hospital five hours from home and my health was the worst it had ever been. I had been in the hospital for about two and a half months, and I was tired. I required supplemental oxygen 24/7 and other things, like my stomach, were not working properly anymore.
That morning, exactly one year ago, my doctor and transplant coordinator came into my room and told my dad and I that they had found a set of lungs that would fit my small frame, something we were told would be challenging. However, there was a catch. The donor was positive for Hepatitis C so if I accepted the lungs I would most certainly contract the Hepatitis. My doctor and coordinator assured us that while this was a very new practice, a new drug capable of curing Hepatitis C would be used to treat me as soon as the virus was detected in my blood. They had consulted with another hospital that had started performing these types of transplants, and the transplant infectious disease specialists were confident that they could clear the Hepatitis from my system.
I had half an hour to decide if I wanted to accept the lungs and if I did, I would be going into surgery at 4:30pm that day.
I say that I had to decide, but this was not a choice. Choosing between suffocating to death with sick lungs and receiving an organ transplant with all the risks and complications that can come along with that is not a choice. Not one that a person should have to make at the age of 23 or ever in their lifetime. I knew what I had to do but one part of my brain was screaming at me, asking why I’d agree to the one thing I’d been afraid of my whole life: having my chest opened up, my ribs pulled back, and my lungs taken out so they could be replaced with the lungs of some unknown person who lost their life too soon; not having control over the outcome; having to endure the pain and frustration of recovery; and having to relearn everything I used to know about my health. The fear and anxiety were overwhelming. How could this be my reality?
I said yes to the lungs and the Hepatitis C.
It’s surprising, looking back, how much of the pain and anxiety surrounding the experience that I’ve been able to forget about. I guess humans are funny that way - able to forget and move on. And I guess it’s true that physical pain really can be temporary. Some of the mental effects still remain because even though it has been a year, a transplant and all the good and bad that comes with it is hard to process. But I’ll get there in time.
I’ve since been cured of the Hepatitis C just as the doctors promised. I was the first person to receive a double lung transplant from a Hep C positive donor in Edmonton, AB, and one of the first in the world. This will change so much in the world of transplants as organs from donors that are positive for Hep C will no longer be turned away and will instead go on to save many more lives.
Besides the Hepatitis C, I’ve had many other complications, some small and some big. It’s frustrating, and sometimes I wonder if I’ll ever catch a break. I wonder why I had to go through all of this bullshit. I think about all the stress and worrying the people who love me have had to endure because of my health. And I get angry. Actually, I get pissed off. And while I am extremely grateful to my donor and my doctors, I think it’s okay and healthy to get angry sometimes. It’s okay to acknowledge that none of this is fair and that it’s been hard.
So I let myself get angry, but then I do my best to think of all the good.
The support my family and I received from our family, friends, and community was overwhelming in the best way. So many people stepped up to help during one of the hardest and most tiring times in our life. I will try to carry this forward by being kind and generous whenever possible.
Even though I’ve been dealing with transplant complications - or ‘warranty work’ as my doctors call it - for most of this year, I’ve still enjoyed the benefits of being able to breathe again. I’ve noticed a big difference in small things that a lot of people probably take for granted. Let me tell you, it is so much easier to clean your car off in the winter when you can breathe and aren’t attached to oxygen. I can walk through airports with luggage without having to stop to catch my breath, and I don’t develop a pounding headache from lack of oxygen by the time I reach my gate. I don’t have to spend two hours in the morning and evening doing therapy and inhaling antibiotics. My days are drastically different now that I can breathe again.
The biggest thing I’ve been able to do since transplant was plan my wedding and get married. I was able to walk down the aisle without oxygen and enjoy the whole experience without getting headaches or becoming low on energy. I was able to keep up with everyone else for the first time in a long time. This was a dream that seemed extremely far off for so long, but transplant made it possible.
The amount of independence I gained after transplant was something I had been yearning for. My husband and I had been in a long distance relationship, but after the wedding, we were able to move into an apartment and start our lives together. I no longer spend hours a day looking after my health. I no longer have to rely on my husband to carry groceries for me. I don’t have to pull an oxygen tank around with me, continually worrying about how much oxygen I have left. I don’t have to ask my friends to wait while I stop and catch my breath. I feel more like myself and less like the person trapped in a sick body that I was before transplant.
Transplant is not a magic fix, and even though I’ve had to overcome some complications from it, I’m still incredibly grateful for this year and the ability to breathe again. The transplant has opened up so many more opportunities for me, and my future is not as uncertain as it once was. Here’s to many more years of stable health! I hope that I can fully embrace this gift and remember that life is precious. I know this better than most. I hope to be able to pass that message on to other people through my story and encourage them to do things they love and spend time with people that have a positive impact on their lives because that’s what really matters. Life is too short to spend it being unhappy.
So cheers to you and your happiness and happy first lungiversary to me! In honour of my donor, go do something you enjoy today! I’ll be doing the same.