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 difficult. 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 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 doing 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, constantly 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. 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.

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I didn’t fail.

For the past several months, I’ve been struggling with depression and anxiety. Almost all of my mental health issues can be attributed to my declining physical health. The Cystic Fibrosis (CF) I was diagnosed with at six and a half months of age has always affected me but has been progressively stealing my life for the last two years or so. Most notably, I now wear oxygen 24/7 because I can’t take in enough oxygen on my own. There is still no cure so I have limited options. The most likely scenario is that my lung function will eventually decline to a point where my quality of life is severely affected and I will make the choice to undergo a double lung transplant with the hope that it is successful and I can get a few more years out of my life where I can breathe freely for the first time ever with the help of someone else’s lungs.

As one might guess, having mortality staring you in the face at the age of 23 is a difficult pill to swallow. It’s something my family and I always knew was coming. I have always been a very stubborn overachiever and, as such, have always been quite hard on myself as far as the expectations I have for myself and the way I speak to or treat myself are concerned. With my health now worse than it’s ever been, the pressure to do absolutely everything I can to take care of myself is immense. And I felt like I was cracking under the pressure.

Since the fall of 2015, I have become pretty withdrawn, spending most of my time in the basement TV room. I am often sad, stressed, worrying over multiple scenarios in my head, easily overwhelmed, and anxious. My appetite and sleeping habits have suffered, I’ve stopped exercising, and my motivation to do anything is severely lacking. I talked about my issues with my long distance fiancé constantly, and my parents expressed their concern for my mental health but I couldn’t seem to snap out of it on my own. The only thing I did know, thanks mostly to my fiancé, was that I needed to work on taming my inner critic because it was pretty out of control.

At the beginning of June, I met with a psychiatrist who the adult CF clinic had just brought on board for an hour-long assessment. Unsurprisingly, she believed I was dealing with depression in reaction to an adjustment I was making in my life (adjusting to the new circumstances surrounding my health, needing oxygen 24/7, etc.) and that the anxiety I had always been able to deal with and keep under control was now running amuck. I agreed that this was a fair assessment and we talked about a plan to deal with these issues. The month between this appointment and my next with her was full of anxiety and instances where I would get so anxious or worried or overwhelmed that I would get caught up in my head and have a hard time moving past it or making decisions. I would either end up crying or doing something to distract myself and avoid what was going on. That month was extremely stressful for my fiancé and I, and my parents. However, I did feel like I was making some progress when it came to recognizing when I was beating myself up as I was able to do that more often. I also had an incredibly helpful BodyTalk session that reminded me to listen to my inner guide, not my inner critic or anxieties, and to let myself sleep without feeling guilty or being hard on myself for doing so because my anxiety riddled mind needed the time to recoup.

My second appointment with the psychiatrist came at the beginning of July and was only a half an hour long which I didn’t think was long enough. She mentioned that we needed to do some work on acceptance and I recounted to her my most recent episode of anxiety. She told me about core beliefs and said that the initial or superficial thoughts I seemed to be getting anxious about probably weren’t the real source of the anxiety. Using that episode of anxiety in retrospect, we did an exercise where she taught me to ask myself what this means for me and my future over and over until I can’t get any more answers. My final answer is my core belief and is most likely what is causing the anxiety. We didn’t complete the exercise but the core belief we stopped at was: The CF is winning. This statement upset me of course, but I didn’t realize until later the significance of it. I was sent home with the homework of finding the core belief every time I had an episode of anxiety. I was frustrated after this appointment because I was impatient to figure out what was going on with me and start feeling better mentally and emotionally.

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Breathing Peace

We breathe together,

in and out.

My breaths start to slow as I feel you match yours to mine.

My racing thoughts quiet as you stop shaking.

Two panicked people longing for home,

two pairs of sick lungs breathing peace into each other.

We are home here.

I watch as you stretch in your sleep,

muscles flexing under skin whose scars I kissed moments earlier.

You sigh deeply and I watch the rise and fall of the chest

where my head often comes to rest.

There is peace in these sheets

even though

sleep makes us vulnerable.

There is comfort in the calm and constant

of your breathing.

We are home here.

Let the world wait outside our door.

We are busy building a life out of sleepy glances and soft kisses.

Buttons

It starts with the “v” created just underneath the little hollow in the middle of your collarbone, at the base of your neck. But then there are the buttons. And the tiny glimpse of skin between them. I will free the buttons of their flannel traps and so, free your skin. I will watch your grin widen as I unfasten each button with the satisfying motion of my fingers. I have no need for the soft skin of you to be hidden from me any longer. Let me reveal it. Button by button. Let me free you of the flannel barrier between your skin and mine.