Sunday, 12 November 2017

Amy update!

Since people keep asking me where Amy is on the transplant process, I thought I would do an update. 

The update is that she's no longer being assessed for a lung transplant and all the earlier assessments that were done has expired. Last year we all thought she would be moving to Toronto within the year. Obviously we were wrong. 

Since being off work, her lung function has stabilized around 30% of the predicted value. Clearly that isn't great but it's now too high to be considered for a lung transplant. The official criteria in Toronto is that your lung function has to be less than 30% and a few years ago Amy would've qualified for a transplant. However, in the last few years the wait list in Toronto has gone from long to longer with more and more people needing transplants and a very low donation rate in Canada (roughly 30% of the population is registered as an organ donor and 20% of families veto the organ donation choice  after their loved one has died).  

Amy, thankfully, has been able to stay relatively infection-free since no longer working which has meant no more hospitalizations. Because her lung failure is a result of scarring and general failure rather than an active infection, there is no feasible way to improve it without a drug like Kalydeco or Orkambi becoming affordable (currently cost is $300,000/year and developed for our CF mutation).

While Amy tries to keep her lungs stable as long as possible, she'll keep drinking coffee and finding cliffs to stare off dramatically.

Sunday, 5 November 2017


The cancer isn't back!

The CF nurse responded to my rambling email when blood work was back and told me that my hemoglobin levels were fine, I was just quite dehydrated and my kidneys were not happy. Also, my magnesium levels were low. I feel like I spend half of my life dehydrated and the other half trying to make up for it and constantly peeing.

People with CF generally have a hard time staying hydrated. Our bodies excrete more salt with sweat so there isn't as much salt to build up in the blood stream - which is what triggers the thirst sensation in the average person - to let us know that we're thirsty. On top of that, people with CF actually need more fluid than the average person because it thins the mucus in the lungs which makes it easier to breath (not my problem anymore but still important!). Of course there are all the usual important reasons to stay well hydrated - happy kidneys, not fainting, better digestions, etc...

I had clearly gotten to a point where I had become quite dehydrated but hadn't realized. I'm sure I didn't drink enough when we were hiking - when it's a cool day I always forget to drink as much.

In the end, I spent the week drinking milk with my meals and ginger water (just some pureed ginger root in the water to make it more flavourful) all the other times and I'm feeling much better with no more lightheaded spells. As for the low magnesium, I'm popping some extra magnesium pills to get my levels back up.

Cancer scare resolved.

In other news, I booked our flights for my three year post-transplant assessment in Toronto at the end of the month. Woohoo!

Monday, 30 October 2017

I've come to the conclusion over the weekend that the fear of a cancer recurrence is never going to disappear. It's not something I worry about daily but it is the first thing I think of whenever I'm feeling off.

For instance, Isaiah and I went hiking on Wednesday around the 5 Islands park loop and I kept getting lightheaded when I stopped to take pictures of all the fun mushrooms we saw. Instead of thinking that I was simply dehydrated and was hiking in humid weather, my mind immediately went to cancer. I flashed back to two years ago when I was hiking and getting lightheaded because my hemoglobin was mysteriously low. Mystery solved: it was cancer.

I think my lower lung function two weeks ago combined with the lightheadedness is what pushed me over the edge and into the valley of "let's constantly think about the cancer returning."

I don't think I was ever really a hypochondriac but I've become one. Although I'm not sure it's hypochondria when it's a very real and specific fear about cancer recurrence. It's more of a low-level anxiety that is sometimes turned up to 100.

And as soon as the anxiety level has been turned up, it's hard to switch my mind off. Instead I ponder all the questions:

"If I start chemo next week, what about my three year post-transplant assessment in Toronto?"
"What about my job?"
"Should we move to Halifax?"
"What if..what if...what if..."

It's ridiculous how fast my brain takes it from feeling lightheaded one day to preparing for hospitalization the next day.

I've gone for blood work this morning so soon this round of paranoia should be behind me. I sent a *probably* over the top email to my nurse coordinator telling her to keep an eye out for blood work and "please let me know if everything is normal."

In the meantime, I will be spending this afternoon carving the giant pumpkin I picked up at the nearby farm this weekend. Happy Halloween, everyone! Don't eat too much sugar!
I choose the goofiest looking pumpkin.

Sunday, 22 October 2017


We're back from Ireland! We had a great rainy time driving around the country. We didn't make it to the Aran Islands as planned due to hurricane Ophelia. Instead of risking getting stranded on the island (not that we had much choice seeing as the ferry wasn't running), we explored the Burren region and County Clare. Staying flexible is important while travelling during Ireland's (previously unknown) hurricane season.

I'm quite tired after the vacation. We tried to not cram too much in each day but, as evidenced by my slightly lower lung function numbers on Friday, travelling and jetleg in itself can be tiring. I'm trying not to do too much so that I can recover quickly.

A few pictures that were on my phone.

Starting off the trip with a visit to an old abbey. 
Had to walk through a cow pasture to get to this one.
We found some cliffs. Apparently St. Patrick split this piece of land from the mainland when the people living on it refused to convert to Christianity, leaving them all there to starve.
Mom and I went hiking near the Ballycroy National Park while Amy stayed at the AirBnb drinking tea.
Sheep grazing in Keem Head, on the Archill peninsula with impressive cliffs in the background. 
We missed the majority of the heather in bloom but there were still a few flowers left to see
Quick visit to rainy Galway where we dried out in the church to see Mary knitting.
With our trip to the Aran Islands cancelled, we spent a few days in County Clare. It has pretty dramatic cliffs beyond the Cliffs of Moher.
Loop Head pennisula also had a dramatic old castle.
Spent the hurricane day holed up in Kilrush. The morning was surprisingly clear but very windy.
We found an open bakery! We bought some delicious bread that had seaweed bits in it.
More cliffs on the Loop Head peninsula.
Stopped at the Rock of Cashel (not pictured) before a quick half day in Dublin to see their impressive library.

Sunday, 15 October 2017