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.
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| 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.
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| 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 26th
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.
