5 year lungiversary!!!

In a week it's going to be my 5 year lungiversary. 5 years!! I can barely believe it. 5 years since that night in the hospital when the nurses came to tell me that there were donor lungs for me. 5 years since I wasn't sure if I was going to live for another few weeks. 5 years since I was too tired to brush my teeth or get out of bed.

If you had told my past self that five years after my transplant I would have gone to a surf camp in Hawaii, bought a house, and be working an almost-full-time job, I wouldn't have believed you. 

Or that I would have travelled to Europe and had a book published, I still wouldn't have believed you.

Our cute little house!

I never thought I was going to get five years out of my donor lungs. I mean, I hoped I would but I never let myself believe it was possible. Especially with the mess that happened during the first year after my transplant. 50% of people post-double lung transplant live for five years. 50% of people who develop post transplant lymphoproliferative disorder are alive after two years. I've been unbelievably fortunate.

I'm not going to list everything I've been able to do because of my donor as the list would be endless. The first item on that list though is “breathe.” Just being able to breathe. Breathe in cold air without my lungs seizing. Breathe in humid air while showering which I no longer dread.

After 5 years I remain grateful that I can walk up stairs without wheezing. I can sleep without needing 3 pillows to prop me up. I can laugh without having a coughing fit afterward. I can stop worrying about how many calories I'm consuming and not have to supplement my diet with Boost or Ensure.

(So much for not starting a list.)

I know everything I'm saying I've said before but it's just so amazing to be reaching this milestone. Alive and not spending all my time in the hospital. After my rough start, I'm not very high priority for any of my doctors anymore. I still have quarterly checkups with my respiratory team but my hematologist has pushed me to annual appointments and will most likely kick me off her rotation soon. I don’t even have to go Toronto this year for my annual appointment which I’m a bit sad about because I love being a tourist in Toronto for a few days. I’ve been deemed stable enough that all the annual tests have been done in Halifax. The only new medical process that happens at 5 years is that they start regular colonoscopies because the risk of colon cancer is quite high. So that’s...poopy.

The risk of skin cancer also increases significantly at 5 years  and although I’ve been followed by a dermatologist since the transplant, I need to become more diligent about sun protection.

There's still a small part of me that keeps waiting for the metaphorical health shoe to drop. I get up in the morning and put on a fun dress, make a giant coffee, and go to work and think “this is too easy” or “when is this all going to change?” I know it's not necessarily rational but it's hard to shake off the feeling like something bad medically is about to happen as soon as I've gotten parts of my life together.

Hiking Cape Chignecto!

I wish I could just relax but it's also that paranoid part of me that keeps me from taking too many risks and reminds me to stop and prioritize my health. I am, and will forever be on my anti-rejection medications which lowers my immune system and leaves me vulnerable to catching any bacterial or viral infections. The medication is to prevent organ rejection – if my immune system were healthy, my body would start attacking my lungs and we don't want that. However, having a lowered immune system means I have to be cautious about getting an infection. I know people who have died post-transplant after contracting the flu virus so the seriousness of infections shouldn't be minimized (get your flu shot!).

Because of this, I avoid people who I know are sick. I wash my hands a significant amount. I nap when I'm tired. Isaiah gets to eat any and all sketchy leftovers from our fridge. I worry about catching the measles whenever there is an outbreak anywhere nearby (as in anywhere east of Montreal). The fear keeps me cautious even though I know I can do everything right and still catch something that could kill me.

But being careful isn't why I've managed to avoid organ rejection, people get rejection for many reasons and I don't want you to think that it's brought on by the person's own actions. It's a thing that happens and I suspect it'll one day happen to me.

And when it does, I’ll deal with it at the time. Life is too short to worry about hypotheticals although it’s much easier said than done.

I kept trying to wrap this up with some tear jerker story about all lessons I've learned in my bonus time on this planet. But what is there to say that hasn’t already been said? Basically, life is short and precious so love deeply, take risks, and follow your dreams.

And while that’s true, the reality is that part of me living every day to the fullest means sometimes I spend way too much time on the couch eating chips, watching TV, and scrolling through social media. Downtime is also an important part of life that's often overlooked but that's a rant for another day.

There’s no possible way for me to distill my gratitude for my donor, their family, my health team, the transplant team, the medical system, and my support network into a simple phrase except to say Thank You. Thank you to everyone who has been there for me and my family. You’ll never know how much your messages and letters meant to us.

Next week I'll officially be 5 years post-transplant so on Saturday Isaiah and I are hold a house warming party/5 year lungiversary (everyone welcome!). On the actual 26^th I'm taking the day off so I can sleep in, have Isaiah make me a fancy breakfast (he doesn’t know this yet), and spend the day with my loving family to celebrate being alive.

5 years. I never believed it would happen.