Monday, 14 September 2015

My post-Toronto life.

For those who have been asking, I have started to compile my old blog posts about the transplant into one document and filling in a few of the gaps. I'm floating with the idea of turning it into a book but it will take a lot of editing and re-writing so no promises. Plus, I'm not sure how many people want to read about blood and poop because there will probably be a lot of talk about blood and poop. Whatever happens, the ending is always the hardest part as my life continues on with unforeseen potential complications ahead.

But I think this is a pretty good summation of my 'post-Toronto' life:

Since being back in the Maritimes, I feel like I've been going full out the entire time. The summer was beautiful and I spent many days at various beaches around the area. We also travelled around to various family members places to get all our stuff back that we had stored with them while we were gone. My regular exercising has somewhat diminished as my knee started acting up again but I've replaced it with hiking and walking and shorter bike rides. I found a place to do pottery until October and am happy to have space in the house where I can mess around with my art supplies and no one complains.

My health has been fairly stable although I've had a few infections that require treatment. I flew to Toronto for my 9-month assessment which went fairly smoothly, even with my waking up at the end of the bronchoscopy. The tests were the standard ones of pfts, blood work, x-ray, ct scan, 6 min walk test, bronchoscopy, and clinic. I hope all the weird 'stuff up the nose' tests are over. The tests will be repeated in November at my yearly assessment. I'll then return around May for my year and half assessment, followed by the two year, and then yearly until I die or they open the rumoured clinic in Halifax.

As I've said before, I was hesitant in agreeing to the lung transplant as it was a terrifying great unknown. I was scared to be hopeful for the future as I felt if I dreamt too much, it would only bring disappointment in the end. It was also hard to dream about being able to hike, bike, and walk up stairs without coughing when I didn't have much energy beyond day-to-day activities. In the end, it's better than I could've dreamt. I sleep comfortably at night, I rarely cough, I have energy to wash dishes. I feel as though I've traveled back in time and have my high-school levels of energy. I never wanted more than to have a regular life with regular problems and while that ship sailed long ago, everything seems to be calming down enough that it seems to be as close as I'll get.

And all because someone agreed to be an organ donor. I am eternally grateful to the donor and their family. Without them, I would've died that in the hospital last November. The team did everything they could to get the lungs to fit my body as they knew it was my only chance at survival. The lungs had to be cut down and aren't the perfect fit but it doesn't matter because I'm alive. Without years of research and funding, the scientific know-how of my doctors and entire health care team, and most of all, the donor, I wouldn't be here today. Without them, I wouldn't have been able to bike with Amy in PEI, or goof off in a kayak with David, or eat mussels and risotto around the table with the family. I would've missed hikes with Isaiah, paddles on the lake, and Skyping with friends. I would've missed my friend's weddings, baby announcements, and milestones.

I do not know how long I have with my new lungs. I may have a few months, a year, or ten years. The odds of a longer life increase with every month that passes. That may seem obvious but it's been shown that if there is no rejection or complications in the first year, the person is better set for the next 5 years. So far I haven't had rejection but I have had my share of complications. I don't know what the future holds but I do know that whatever happens and whatever curveball comes my way, I may panic for a minute or two, but I can handle it. 

This part of the world is beautiful.


sue said...

Allie I am so glad to have you still here in my life. I give thanks for the people who donate their organs. this is a beautiful part of the world and so much more so because of people like you who are in it and who remind us how precious life is when we take it for granted so much. I`d read your book and if you need editing and I can help or proof-reading ( I am better at that) I would help where I could! Poop stories don`t bother me! :-)

~G said...

I would read that book for sure! And I think it might be an important one for people who never have to consider the implications of needing a donated organ.
Do it! I'll help any way I can come up with! :)

LittleM said...

I would also read that book. I also hope that one day I have a chance to write a similar book. This post spoke to my soul as you know I'm about to go through the same journey (though we know no journey of this or any type is the same). Thank you so much for this post. Ive said it a million times but I love your writing. I'm oh so glad that in the midst of this, your early stages post transplant, you are glad you chose transplant. It's very very inspiring for me.

Dave VanSlyke said...

After all you've been through, especially in the last few years, I know that you can face and endure anything! Write the book (and some addenda to the transplant manual).

Ruth Boughan said...

So good to read your post-transplant summary. You've been through so much yet you have a thankful attitude. I too love to read your writing and look forward to the book!

Janet Firth said...

Thank you for sharing your heart and "“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.”

― A.A. Milne

love Janet Firth