Four Year Lungiversary!

It's my four year lungiversary tomorrow! What else to say that I haven't already said other years? I'm so thankful for these extra years I've had because of my donor. The transplant changed my life and I could make an endless list of all the things I've done since transplant that I would have missed because I would have died. The gratitude I feel toward the donor and their family for these years and everything I've been able to do has not abated over the years.

Adorable card that Mom made for me.

I've been thinking about my actual transplant experience a lot lately as I work my way through the first set of book edits from my editor. There's no escaping thinking about my transplant when I'm looking at the document that talks about it for hours on end. 

Writing the book helped relieve a lot of my post-transplant anxiety but editing and rereading the play by play of my recovery is still hard. It's like reading an old diary at this point. I remember the major plot points but I've forgotten the emotion behind the event until I start reading it again. Four years out of transplant and three since my cancer diagnosis, and the whole experience sometimes feels like it happened to a different person. Maybe because I was drug induced most of the time and also because it's hard to remember what it was like to be so tired that I could barely walk to the bathroom. I promise the book won't be that intense to read as someone who is more apart from the story. But the experience was hard.
There's nothing easy about a lung transplant. 

The doctor at my four year check up in Toronto last week reminded me that living post-transplant is not an exact science and the doctors are still figuring it out. Because I'm off one of the major anti-rejection medications due to the cancer, he said he wanted to adjust my target levels for my immunosuppresent medication because he feels the risk of PTLD returning at this point is low. But then he said "I'll have to talk to another doctor about this, we don't know what the target should be for you. There's no guide for this type of thing." It's a reminder that no matter how good the medication is now, how good survival rates are, it's still a relatively new science and the researchers and doctors are still learning and exploring ways to make it easier.

I forget sometimes that I still don't have the stamina and energy of a healthy person. I was so tired getting back from Toronto and couldn't figure out why until Amy gently reminded me that I don't recover the way other people do. I think I'm normally healthy until I start going to bed at 9pm and sleeping for 11 hours straight to recover from a four day trip. I may have also picked something up on the plane due to my tendency to catch every infection that's going around.

Regardless, I'm doing fantastic. I made it four years with no signs of rejection *knock on wood* I didn't let myself imagine that I would be at this point while I was waiting for lungs. I never dreamed I would feel this good. That I would have started wilderness hiking with Mom, or been able to travel so much, or spent nights taking pictures under the stars with Amy. So many moments big and small that I appreciate.

Life is amazing. Never take it for granted.

Star gazing under the full moon.

Four year post transplant assessment!

We're in Toronto! Four year post-transplant assessment! For whatever reason, I'm a week earlier than the past few years which meant we flew in during the Christmas parade. The flight was a bit late which meant we missed most of the parade transit madness – we only saw a few people heading in the other direction with bright orange thunder sticks and Santa hats. I thought maybe the city wouldn't be in full festive mode but I was wrong. It's holiday madness.

We're back at our trusty B&B because I'm not confident the government will accept an AirBnb receipt for a hotel stay and this place always offers a great breakfast.

I told myself that we weren't going to spend the first night walking madly around the city, we have time and can space it out this trip. Well, we walked up Younge Street to an Ethiopian restaurant for supper and then down to the Eaton Centre in a massive loop so the “don't walk everywhere” plan lasted until we actually left the B&B.

My appointments are on Tuesday so we have tomorrow to ourselves. We have plans to wander around the Kesington market and probably Queen street and then meeting various relatives for meals. I've officially started first stage edits for my book (first of three!) so I actually have to do some work as well as I have two weeks before my editing deadline.

From what I've received, the appointments on Tuesday should be fairly straightforward. There's no bronchoscopy which is amazing and no CT scan which I care less about. I have my comprehensive blood work and lung function tests, X-ray, and a walk test. I'm not sure my walk test will be better than last year but I can't imagine I'll be much worse. I told myself on the way here that I'm not going to be as intense about the walk test this year and not worry about beating last year's numbers. I'll find out on Tuesday if I can keep up my 'be chill' attitude.

The overall plan is to eat all the types of food we can't get back in Springhill (which is everything except pub food).

Organ donation and letter writing

On The Current over the past month, they've had two interesting discussions about organ donation in regards to contacting the donor family/meeting the recipient. 

The first interview was from a family whose son donated organs and they received a letter from the recipient. They used that letter to track down the man on social media and contact him. After many conversations they met up and are now "like family." Everyone was happy and the woman said, "When I laid my head in on his chest I heard my son..." She thought that everyone should have the option to meet if both parties consent.

Listen/read it here:
https://www.cbc.ca/radio/thecurrent/his-heart-still-beats-strong-to-give-life-how-an-organ-donation-united-2-families-1.4874324

The second conversation was a reaction to the first where they interviewed one woman who has spent the last 20 years waiting for a thank you letter from any of the people who got her brother's organs. They also talked to a woman who received a liver years ago who commented how hard it is to write a letter to the donor family. The liver transplant recipient said "There's a real head game that goes around with organ donation. You really do carry a huge degree of guilt along with it and everyone needs to be able to heal in their own way." The woman who would like a thank you note said she just wanted to know that her decision (even though her brother was the one who signed the donor card, she officially had the final say) made a difference to someone's life. 

Listen/read it here:

https://www.cbc.ca/radio/thecurrent/why-a-transplant-recipient-says-writing-a-donor-family-can-feel-impossible-1.4883781

Each province has different regulations regarding anonymity and transplants but I believe generally the donor process is anonymous (unless it's a live donor) and a few provinces have a provision that they'll give out information if both parties agree.

I think keeping it anonymous protects both the donor family and the recipient. It's great when it works out like the heart donation case but I can see how there could be a lot of issues with meeting the donor family. They might have opinions on a recipient's occupation (if they can work at all), politics, or religion. I would hope that everyone would get along and be grateful that the organ donation helped save someone's life but grief and losing a loved one can do strange things.

The woman who had the liver transplant was right in saying that it's important to make the organ your own and that you have to move on post-transplant. Not that it's possible to ever forget the donor. Or ever stop being thankful. But it's true that the entire thing is a head game and as irrational as it can be, there is guilt involved with needing someone to die in order to live.

I had been thinking of writing another letter for my 4 year transplant mark (which is in a few weeks!) to the family of my donor  even before hearing these interviews and now I think I will. I have no idea if my first one made it to the family or how it was received or if they would want a second one. They always have the right to refuse communication if they don't want my ramblings. It's one of the many confusing things that they don't prepare you for pre-transplant and that everyone handles differently.