Birthday!

It's my birthday! Yay!

I had an great day eating too much food and playing board games. I'm grateful to my donor every year that I get another birthday and looking forward to my 33rd year around the sun!

Amy update

I've spent a lot of time in the past two weeks driving back and forth to Halifax. I did have a clinic and haematology appointment but also Amy has been hospitalized for the last two weeks. Her clinic appointment was much worse than mine, her lung function crashed out after getting a cold, even with being on oral antibiotics, and the doctor said it was time for IV antibiotics.

Once admitted, the x-ray showed some pneumonia and a terrible lung infection. I got sick immediately after handing out with her for a day and was paranoid I was getting pneumonia but thankfully my cold has stayed all in the sinuses.

I went up to Halifax for my respiratory clinic last week and stayed a few extra days to do Amy's laundry, bring her coffee, and go out for a few meals. I had to return home to work for a day before zooming up again on Friday for my hematology appointment (everything is fine) where Mom, Dad,  and Isaiah joined me later that day.

Amy was able to leave the hospital with us for a few meals and a bit of shopping. On Saturday afternoon, while she told us to go away so she could nap, we went for a skate on the Halifax Oval. Something we all talk about whenever we visit Halifax but it so rarely happens. It was quite warm out but the ice held as we zoomed down one side of the oval and then struggled back against the wind.

Amy has been fine without that many visitors because the IV medication has knocked her out and she uses her precious down time to catch up on sleep. We're all hoping for a pre-Christmas discharge but as of yesterday, she's developed hives as a reaction to the medication so the doctor's may want that to calm down before discharge. Also, another week of IV medication (once it can be started again) would help make sure the infection is actually gone.

The big discussion now is "what about Toronto/being listed for transplant?" Amy had been stable for so long and the doctors were happy to keep things as they were as long as possible but now with this crash, it's all going to depend on how her lung function rebounds after the medication.

If it goes back up to where it was (around 30% predicted volumes), it didn't sound like the doctors would start the work up but if there isn't as much improvement as hoped, the doctor will start ordering the tests. That may mean the teams keeps her in hospital a few more days as it's easier to get the scans and the blood work done while in hospital. But maybe not because there are people camped out in the emergency department waiting for her bed.

Transplanted: My Cystic Fibrosis Double-Lung Transplant Story

My transplant story turned book is ready for pre-order!! The publishing date from Nimbus Publishing is April 30 if you want to wait and buy the book from a store. 

It's so official and it's hard to believe that me sending a manuscript to Nimbus with a "let's see what happens" plan is at this point where I'm going to have a book in stores. It started out as a compilation of blog posts from my transplant but through the magic of editing and being told by my early readers "this is much too long," it's now a concise narrative that explains the transplant process and about growing up with CF. I hope everyone enjoys it.

"When Allison Watson awoke that day, she knew she was in a hospital bed. That's all. She had no idea how much time had passed since she had seen her family. When she tried to focus, her vision was blurry, and when she tried to wave someone down, she became so exhausted she thought she was dying. Hours later, when Watson was able to communicate, she asked a nurse if the news was good or bad. "It's good news," the nurse replied. "You had your lung transplant four days ago."
About 4,100 people in Canada have cystic fibrosis, and many are living longer today, thanks, in part, to transplants. CF mainly affects the digestive system and lungs, and there is no cure. In this candid memoir, Watson describes living with the disease and her life-altering surgery in 2014. Watson and her sister, Amy, both grew up with CF, and Allison had always believed that Amy would be the one to get a transplant first. The decision to undergo surgery was not easy. Nor was the road to full recovery. In this book, Watson, who cycled across Canada with her brother in 2008 to raise awareness of CF, describes her journey."

Christmas Cards!

It's December, that means it's time for Christmas cards! This year I made a bunch of trees and since I was low on paper, I turned them into postcard style. I've been trying to use up what I have instead of getting more crafting supplies that I don't use as often as I would like.  I started taking pictures of them before I sent them out but then forgot after about four.

Mom has a lot of Christmas fabric that we've been slowly using up over the years and I thought the poinsettia one was perfect for a Star Wars themed festive card. Even though there ended up not being actual flowers in the end product. It's still fairly festive.

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.

Halloween Cards!

Happy Halloween! Well, in a few days. I made some Halloween cards last week, a mix of new and old patterns that I made up or found online. I get bored making the same ones and it's always fun to try something new.

Black cat in pumpkin! 

Vampire teeth!

A quick Halloween print postcard!

Snoopy in a pumpkin wishes you a safe and spooktacular Halloween! Hope you eat lots of candy!

Book update!

I promise I haven't forgotten about blogging! I kept meaning to write over the past two weeks and then something else always seemed to come up - like organize all the trip pictures from Amy. Isaiah and I spent the weekend in Halifax. A rare occasion where I didn't have any hospital appointments, we were just able to hang out with people. All my doctor's appointments seem to be crammed in a two week schedule at the end of November but never on the same day or sequential days, that would be too easy.

It's time for a book update! The book I signed the contract for last year. The one that I wrote several years ago and I kind of forget what I wrote at this point. That book!

It's still scheduled to come out Spring 2019 with Nimbus Publishing. An editor is busy working away at it right now and I'm sure she'll soon have many things for me to fix/change/scrap.

In the mean time, Mom found some (adorable, of course) childhood pictures of me for the book and over Thanksgiving weekend, I forced Amy to take some pictures of me for my "author pic". We tried several locations but the best one was in front of an abandoned building outside of Cornhill.

It's still like 5 or so months away before my book will be published but I'm excited that things are moving.

Fulling embracing my hipster vibe

Switzerland/Budapest!

Back from vacation! We had a great time eating cheese in Switzerland and wandering around Budapest. I managed not to lose weight while being on a long vacation which I think is the first for me. We did eat a lot of cheese and chocolate but I honestly do that on most vacations. The key difference is being mostly healthy. It's amazing how much less tiring everything is when my body isn't fighting to breathe all the time or I'm not having coughing fits many times a day.

Amy took some amazing pictures with her fancy camera but since she hasn't had time to go through them yet - it has only been three days - here are pictures from my phone.

Took a boat ride from one town along Lake Brienz to another and then hiked back along the lake.

Paddleboarding at the swimming spot by David and Cindy's house. There are two SUP left at the park for anyone to use. They were pretty beaten up and the paddle was a old broom handle but it worked.

View from David and Cindy's house.

Classic Swiss cow in mountains. 

Classic road over the Alps that I drove. We met cyclists, motorcycle and sports car clubs, and the regional public bus that zoomed around the corners. 

Spent an afternoon strolling around Lucerne.

David and I did a "Via Ferrata"(meaning iron path) from Murren to Gimmelwald. We strapped on harnesses and helmets and climbed on the side of a cliff with only rebar for footing in some sections. So much fun! Amy strolled down the easy path, aka the road, with her oxygen and Isaiah did a longer hike that didn't involve walking over a waterfall on a single piece of wire.

After leaving David and Cindys, we spent a day in Vienna looking at jewels and churches that all had advertising on their renovation projects.

Budapest was a place I had been wanting to visit for awhile and the city did not disappoint. With their amazing transit system, we zipped from neighbourhood to neighbourhood between so much walking. It was very much a old Eastern European city. Isaiah said it reminded him of Paris meets Cuba with WWII memorials.

The baths! We went in the evening before the temperature dropped to appropriate fall-like weather and it was a lot of fun. Isaiah went in all the cold plunge pools while I stuck to the mid range ones. Amy and I were paranoid about getting dehydrated so we didn't stay in any for very long.
My eye had a weird reaction to (we think) one of the mineral pools so I spent the next two days putting antibiotic eye drops in my swollen eyelids. Thankfully the pharmacist spoke English when Isaiah went to the pharmacy and asked for drops.

Budapest has an iced coffee culture (unlike Switzerland) which made Amy and I very happy. 

We did a boat cruise - aka took the public ferry - along the Danube to Margaret Island for a morning/afternoon in a green space. 

The last night was spent watching the sun set over the Buda hills and then watching the buildings change colour over the Pest side. 

We're off to Switzerland! Isaiah is thrilled to have a vacation from work and I'm excited to spend time in the mountains and eat chocolate.

Amy and I don't have lungs to handle the altitude of the highest Alp peaks (or even to the top of some of the gondolas) - her because of her terrible CF lungs, and me because I just don't handle altitude very well. So instead we'll be hanging out in the lower valleys which I'm sure will be lovely on their own.

CF Connections Magazine

Happy September! I inadvertently took a two week holiday since I was travelling the last two weekends. But I'm back now!

Amy and I wrote an article for the CF Canada magazine for their Summer/Fall 2018 issue. The magazine is aimed at people in the CF community, either people with CF or family members of someone with CF. IWe basically just talked about our lives and what it was like growing up with CF. We tried to stress our independence and how we were raised to live in the moment as much as possible. The writing is a bit weird with us going back and forth between third and first person but I guess that's what happens when there are two people writing an article.

Here is the link to read it, if you want the version with pictures. Or I posted the text below.
https://www.cysticfibrosis.ca/news/publications Go to "Cystic Fibrosis Connections" then "Summer/Fall 2018" and we're on page 12-13.

THE WATSON SISTERS: IN THEIR OWN WORDS

We were both born and raised in Petitcodiac, NB. Amy is 36 and Allison is 31. We have a younger sibling, David, 29, who does not have CF.

Our family never knew anything about CF until Amy was born. She was diagnosed at birth due to meconiun ileus and had to be rushed to the IWK hospital in Halifax to be operated on. Our parents then received a crash course in aerosols, physiotherapy, and digestive enzymes. Allison was born four years later and our parents went through the entire experience again.

Allison struggled with her weight from day one, and as a result spent much of her first four years in the hospital. She had a feeding tube inserted at 14 months to help with weight gain which was removed (finally!) when she was six and had stopped throwing up everything she ate. She was a feeding tube success story.

Our family did not let CF be the dominating factor in our lives. We had a very active childhood, with camping trips, hikes, and participating in sports. We all went on road trips, including across Canada in a minivan, for a month. Of course we still had our daily CF routine of aerosol masks twice a day, chest percussions, and leaving a trail of enzymes behind us everywhere we went.

We had a few hospitalizations as teenagers but overall were quite healthy and were able to do the things we enjoyed. Our parents always encouraged us to have autonomy over our own health. As such, we were confident going with our friends to sleepovers, overnight school trips, and summer camps. This independence helped when we went to university and were able to advocate for our health.

Mom and dad never hid the fact that we have CF and its implications for the future. As a result of this education, we have always been active participants in our own disease management. This has enabled us to have active and fulfilling lives without letting our disability become a barrier.

We have been able to fulfill our love of travelling to places such as Europe, Egypt, New Zealand and many more. Allison and David were able to cycle across Canada in 2008 as an awareness campaign and fundraiser for CF Canada.

Our family has been active in the local CF Chapter. We have fundraised for the Walk to Make CF History since the Moonwalk days and have talked at various Shinerama and other fundraising events. Dad has been actively promoting awareness of CF since we were born. He did annual talks during elementary school to explain the disease to our classmates which helped them know why we were taking pills and coughing all the time. He was honoured to receive the Breath of Life award at the latest CF Canada Volunteer Leadership Forum.

Once we reached adulthood, the effects of CF had a detrimental impact on our lives. Allison was hospitalized many times for lung infections and had to stop working as a recreational therapist due to health. With her boyfriend, Isaiah, she moved to Toronto where she could be listed for a lung transplant in 2013. During her time in Toronto, Allison felt the need to connect with people in the CF community who had also been through the transplant process.

Neither Allison or Amy were very active in the online CF community because growing up as siblings with CF meant that we always had someone around with a shared lived experience to talk to whenever we need support. We were able to commiserate with each other about hospitalizations, lung failure, and other ordeals.

Throughout Allison’s transplant process, we both have made online CF friends within the community. Allison received a life-saving double lung transplant in the fall of 2014. The recovery from the transplant was the most intense thing she’s ever gone through in her life. It was challenging but worth the effort in the end.

As a side-effect of the transplant, she has CF-related diabetes and was diagnosed with post-transplant lymphoproliferative disorder in 2015. After intensive chemotherapy, she is now two years cancer free and is again physically able to do the things she enjoys.

Amy was a NNICU nurse for over 10 years but has recently had to stop working due to declining health. She hopes to eventually receive a lung transplant but is currently unable to be listed due to the shortage of organ donors. She is working hard to remain stable by being as active as possible and always pushing at the edge of her physical limitations.

During our lifetime, we have seen a dramatic improvement in the quality and care for people living with CF. Having specialized CF clinics with a multi-disciplined team, improvements in medication, and the possibility of a transplant at the end of life have all been beneficial to our lives. This has all been possible through the work of CF Canada and their partners. We appreciate the work that CF Canada and their many volunteers have done in the past and continue to do to help enrich the lives of Canadians with CF.

Writing workshop!

I decided a few weeks ago to take a workshop called "Crafting the Category Romance" run by my talented cousin who writes category romance under the pen name of Michelle Karl. If you're wondering what category romance is, they're the books put out mostly by Harlequin (although other companies publish them as well) and are lines called "Intrigue," "Super Romance," or "Historical." All the books in the lines follow the same themes and I refer to them as "book candy" where you read them for 100% entertainment value which is a completely valid reason to read a book.

I've been knocking around the idea of trying to write fiction for awhile and have tried it a few times in the past but it always frustrated me because I never had a clear goal. Now my goal is to write a full book! Nothing like jumping in with both feet. I'm trying romance because I read quite a bit of the genre (although not many category books until the last few weeks) so figure it's a good place to start rather than attempting sweeping epic about dragons and zombies.

Michelle writes for the 'Love Inspired Suspense' Harlequin line which is the Christian themed romance line of Harlequin. There are pretty strict guidelines about what the characters can and can not do - no swearing, drinking, or gambling allowed. Only a few brief kisses by way of romance. I'm aiming for this line too because 1) I've read quite a few of them and 2) I feel more comfortable starting out if I don't have to write a open door passionate affair.

Mom and I spent a lot of time on the Footpath coming up with ideas for my class and since it's a suspense theme, a lot of ways the heroine could get in trouble or almost be murdered only to be saved by the hero. I'm going with a Fundy Footpath location because it's fresh in my mind and this way I don't have to dream up a new spot. After many discussions on how someone could be stalked or pushed off a cliff, Mom then ended up having nightmares about someone coming after us while hiking so then we started discussing different topics. But now I have a list called "ways to almost die while hiking" that I have to figure out how to incorporate into the story.

So far the workshop has a been really informative and very inspiring on ways to get started as a fiction writer. I hope that I can write the book, even if it never gets published, because I think it will help my writing overall and it's always fun to try new challenges.

Anyway, that's what I'm up to these days between avoiding the heat and dehydrating food for Mom and I's next overnight hike (to be determined).

Hiking the Fundy Footpath

Last week, Mom and I hiked the Fundy Footpath completing one of Mom's lifelong goals. Last year we started overnight camping with a few one night hikes and this year we were more strategic about building up to the four day hike. We started with one night at the Kenomee canyon in Economy, NS and followed up with a two night trip around Cape Chignecto. We decided after that that we were ready to tackle the Footpath.

All smiles at the beginning!

We began in St. Martins at the suspension bridge on a foggy Friday and set off toward Alma.

Two minutes in!

The hiking itself was intense. The trail was not overly long but the ascents and descents made every kilometre seem longer. The full bags on our backs didn't help either. I think the intensity of the cliffs surprises some people who are not ready for New Brunswick to be tough. The trail repeatedly goes from sea level to the top of the 200m cliffs. We broke every day down to the number of climbs we would have to do that day.

Day One

The first day was our “easy day” with only a few serious climbs.The first section from St. Martins to Little Salmon River had some stairs and a few bridges to help with the cliffs and crossing streams. I'm not sure the stairs helped everywhere because instead of switch backs, the stairs meant climbing straight up or down the hills on the wet wobbly stairs.

First stream crossing.

It was pretty foggy that first day so we didn't have great views at the look-offs but at least it was not actively raining. The people we met on the first day were soaked, having hiked through the rain of the previous two days and seemed happy to be almost done. They all had a certain look in their eyes when they said things like “wow it was hilly” and “those cliffs...” and trailed off without finishing the sentence. We had been warned before but it was a reminder that this would be tougher than Cape Chignecto.

Stairs down to Cradle Brook.

We camped at Cradle Brook and after filtering and boiling water for the next day (this is the only way I feel comfortable drinking stream water with my low immune system. It means carrying more fuel and spending a lot of time waiting for water to boil but I'm pretty nervous drinking raw water otherwise), we spent the evening on the rocky beach watching the fog roll into shore. And stretching our tired bodies. A lot of stretching.

The cliff to climb in the morning.

Day Two

The second day we started by climbing out of the Cradle Brook valley and after breaking for lunch, tackled the climb out of the Little Salmon River ravine. 

Little Salmon River.

All our meals were dehydrated food we prepared and were quite delicious. We had a supper of cheesy veggies, shrimp, and rice, and another of a tomato bean mushroom risotto. For lunch we had chili or soup that we would prep at breakfast and keep (semi) warm in a thermos. When matched with melba toast and rehydrated hummus, it was quite filling. Our hunger was the special ingredient that made every meal taste amazing.

The climb out of Little Salmon River was everything we had been warned. It started with fairly okay switchbacks and then the trail narrowed so it felt as though it would only take one misstep to tumble down the hill. The wet roots and rocks didn't help the footing.

Kilometre sign before the climb! 23km left to the park!

We reached a point where the trail widened so there was less “I'm going to fall into the ravine” fear. We stopped at a little look off and I started to feel a bit lightheaded. My legs also started really complaining. At first I thought it was just the heat and humidity that was taking me down so I drank a ton of my Gatorade but that didn't really help. Two minutes later, I was convinced that I wouldn't be able to do the trail anymore because I felt so weak. And then I realized it was probably just my blood sugars (after this long as a diabetic, you would think I would recognize the symptoms faster). Sure enough, my sugars were low. I stuffed my face with some food and waited for my body to feel better.

Managing my diabetes is the hardest part medically for me on these multi-day hikes. My anti-rejection medication, vitamins, and digestive enzymes add weight but they're so routine that I don't really think about it. The water I treat as much as possible to avoid dying a stupid death, but managing my blood sugars with activity is always a struggle. I can generally manage okay with regular exercise but when I'm doing an intense activity, day after day, my blood sugars and dosage requirements get thrown off.

It doesn't help that I take two types of insulin, short and long acting. The short acting I take before every meal and ideally it kicks in after two hours. The long term one I take in the morning and it's suppose peak with my prednisone in the afternoon. Of course, exercise affects everything. It changes how fast the insulin is absorbed, it varies how much I need with food, and there is always an cumulative effect to think about.

One thing I have learned from getting diabetes is how much exercise changes blood sugars for me. Short intense exercise in the morning has a reducing effect for the rest of the day. Also, sustained intense activity one day can lead to reductions on the next day as well. But then sometimes intense activity means my pancreas kicks in and decides to make insulin to help me out. It's all very confusing. It's a lot of science and a little bit of magic to get my dosage right on multi-day hikes.

The crash I had on the Little Salmon River incline was my only one of the entire Footpath hike which is really good for me. I had a couple on the Cape Chignecto trail but it seems I'm getting better at management for these types of events.

Bridge across Rapidly Brook

Once my blood sugar levels were back up to a reasonable level, I felt much better. The trail all seemed much more manageable as well. Once we were at the top, we had some reprieve before it was back down to Rapidly Brook. The day continued and we had a nice break at the beautiful Wolfe Brook when the sun came out. I would have camped there for the night but Mom wanted to keep going to our planned stop. 

Quick stretch break.

We made it to Telegraph Brook where the camping site was close to the rocky beach beside the waterfall. It was a beautiful place to camp. A predator bird (a peregrine falcon maybe?) kept flying over the ravine, making the most terrifying screech as it flew overhead.

Campsite at Telegraph Brook.

Day Three

The rain started around 2am. I think. Mom says I slept through most of it but woke up when it started thundering. The lightning seemed scary close but that may have been because we only had a thin tent between us and the storm. Thankfully the most intense rain ended by morning, leaving a mist and occasional drizzle. We tried our best to keep everything dry but we were pretty wet by the time we started hiking.

That morning we met Amy and Dad at an access road. They drove through the maze of back roads behind Sussex and brought us some new supplies. Is this cheating? Maybe. But it's not like it shortened our time any and we were carrying a lot of fuel for my high maintenance water demands. It was nice to get a change of dry clothes and drink water that didn't have a hint of old coffee (we stored our boiled water in old coffee bags while it cooled). The iced coffee and raspberries Amy brought were heavenly. We packed up enough stuff to last us to a fifth day just in case we needed it.

It cleared off in the afternoon for a great view of St. Martin's head.

That third day was a shorter day which was nice because it was unbelievably humid after the rain. The air had that 'pea soup' quality that has come to define this summer in the Maritimes. We managed but were very happy by the time we reached our campsite at the Brandy Brook beside the Tweedle Dee and Tweedle Dum waterfall. There was no beach access that night but we were able to dry out our stuff a bit before we went to bed.

Airing out the tent!

Day Four

The fourth and last day was our longest. Thankfully, the weather was cooperating and the humidity had finally dropped. The perfect day for hiking 18km. We crossed Goose Creek around low tide as planned (there is no way to cross at high tide) and after that the kilometre markers seemed to pass by at a reasonable speed even with the five climbs that day. 

Goose Creek!

We reached the zero kilometre trail marker of the Fundy Footpath at Goose River and I wish I had captured Mom's squeal of excitement at that point.

Look at that sweat shine.

We were officially done but there was another 10km to get to an actual access road. The last 10km through Fundy National Park is pretty boring. It has all been turned into a mountain biking trail so it's wide and mostly gravel. Very monotonous after spending four days on a beautiful trail through the forest. It was an anticlimactic way to end the hike. But at least it wasn't very strenuous (although the loose rocks were surprisingly hard on the bottom of our feet) and after a few hours on that trail we were out! 

Yay done!

Dad was there waiting for us with sticky buns from Alma and then took our smelly selves for some fried food at the take out.

The Conclusion

I said a few times while on the Footpath that it was the hardest hike I've ever done but I'm not really sure that's true. I never doubted my physical ability to do it (minus the one time I had low blood sugar). There was never any point where I looked at the cliff ahead and thought "I can't climb up that." I had descents where I said, “Wow, that was terrible” and ascents where I said, “I hope we don't have to go back down for awhile” but my legs were strong and carried me through. I was tired but fully capable.

So was it more demanding than the hike in Naxos to 'Zeus's cave' where I must have thrown up at least 4 times along the way? Or the hike in Newfoundland where I had to turn around early because the humidity and heat made me feel nauseous and unable to breathe? Those made me physically sick with my CF lungs.

The difference between my past experiences and now makes me feel as though I've lived two separated lives. My pre-transplant life where I threw up on hikes and the post transplant hike where I can tackle one of the hardest hikes in the Maritimes without a second thought. It's such a disconnect that I sometimes don't even feel like that part was real. But I still remember it vividly, how I couldn't even imagine ever feeling so healthy again that the Footpath would be on my radar. How it became a struggle some mornings to just get to the street car to take me to physiotherapy at the hospital.

I am so privileged to have been given this gift. My new lungs have helped change my body to be stronger and healthier than it ever has before. Sure, I still need rest days. I need my chill days where I relax and read my book or watch TV but that's part of the balance. And one side of the balance is to strap on my bag and hike for four days through the wilderness of New Brunswick.

Is the heat wave over yet? I've escaped to the coast (by that I mean hiking the Fundy foot path) where I'm hoping it's a bit cooler in the woods beside the Bay of Fundy.

Amy was interviewed by CBC to discuss what it's like having cystic fibrosis after she tweeted angrily to the universe about how she couldn't breathe back in early July. Since the heat seems to be ongoing, I feel as though it still applies.

I don't feel it so much with the breathing but definitely do with the risk of dehydration. It's always a struggle to stay hydrated even when I'm not doing anything.

Here is the article. I linked the headline and then copied and pasted it from CBC.

Heat wave forcing people with health conditions to hide indoors

The challenges of living with cystic fibrosis during a New Brunswick heat wave

Alyssa Gould · CBC News

Many New Brunswick residents are hitting the beach, pool or neighbourhood splash pad to beat the heat, but Amy Watson, 36, is hiding inside her air-conditioned home.

But hiding from the heat isn't a choice.

With a lung capacity of only 25 to 30 per cent, being outside in this week's heat could result in a medical emergency.

"When I walk outside it's like a truck sitting on my chest basically."

Watson was born with cystic fibrosis, a genetic disease that affects the entire body but primarily the lungs and digestive system.

An accumulation of thick mucus in the lungs and digestive system makes it hard to breathe and to digest foods.

Simple tasks, like going out to pick up groceries, or checking the clothesline in the middle of the afternoon can cause breathing troubles.

'Like breathing soup'

Watson says that the humidity is what causes the breathing troubles.

"It's like you're trying to breathe soup," she said. "The air is so thick that you're trying to breathe and pull in that thick air."

Not being able to take a full breath along with the presence of thick mucus in the airways makes it extremely difficult to inhale the hot and heavy air.

"They just can't normally get a deep full lung of air due to the damage to their lungs," said Barbara Walls, director of health promotion at the New Brunswick Lung Association.

That means getting less oxygen than people with healthy lungs. Less oxygen causes the body to tire a lot easier and faster than the average person.

It's not just breathing  

Watson isn't just worrying about breathing in the scorching heat. She also has to worry about dehydration.

People with cystic fibrosis get dehydrated much faster than the average person. Those with the genetic disease also lose salt faster through their sweat.

"Not being able to regulate their temperature, and on top you put an environmental stress of heat and humidity. It's going to be very uncomfortable for them physically and to try and breathe," said Walls.  

Watson says she and others with cystic fibrosis have to stay constantly hydrated by drinking both water and sports drinks. She also eats foods with higher salt content to get back to normal levels.

What to do to keep cool?

Hiding away in her air-conditioned home and planning her day around cooler times, in mornings or evenings, are helping Watson get through the heat wave.

 "You have to evaluate if what you're doing is worth the risk to your health and usually it's not," she said.

Walls said there are small things people with or without respiratory illnesses can do to feel good and stay cool during the heat wave.

One of her tips is to monitor the air quality in your city.

"Air quality can seriously impact how you're feeling," she said. "It can trigger asthma attacks and exacerbate symptoms of your lung disease."

Drinking water, wearing light and loose clothing and avoiding the outdoors between the hours of 11 a.m. and 3 p.m. are also good ways to avoid getting too hot.