Happy New Year!

Happy New Year! And Happy Birthday to meeeee!!!!! This birthday doesn't feel quite as symbolic or important as last year's big 30. It's more of a recognition that I'm doing well and am moving forward from all my medical drama. This past year is the first in about 8 years where I haven't spent a single day of it admitted in the hospital.

Onto a new year! My goals for the last year were to run a 5km and do something creative once a week. I ran the 5km but I'm not sure I actually did something creative every week. I did paint and sew way more last year than previous years so I count that as a win.

My non-exercise goal this year is to work on my calligraphy. I would like to improve my handwriting so it no longer looks like chicken scratch.

I also am going to try and do yoga every day. That may be a bit ambitious but I've been doing yoga videos for the last few months and really enjoy it. I feel better overall and I think it's improved my balance for other sports like skating and cross-country skiing.

My other exercise goals are to hike 50 trails, run five 5km (because I did one last year so why not jump to 5 this year), and cycle 750km.

2018 will be the year of activity! 

I hope everyone has a warm and wonderful New Year!

Merry Christmas!

MERRY CHRISTMAS!!!!!!

We had a wonderful time in Cuba. We spend the week snorkelling, kayaking in an inflatable kayak, and eating a lot of ice cream. We were in a small town where almost no one spoke English so it was a very immersive experience into the Cuban culture. Cindy and David translated for us at the restaurants but even then, it was somewhat of a guess as to what we were ordering. It was all delicious (except for the spaghetti...do not order spaghetti in Cuba) and we had a lot of fun. I would definitely go back if I get the chance.

After spending a week in a country of scarcity, it was a bit of a shock to return to Canada and be bombarded with Christmas advertising telling me to buy everything in sight for every person I know. While that is over the top and to be ignored, I am thankful for our full grocery stores and consistently running water.

Our Christmas will be quite low-key although the meal on Boxing Day is going to be wonderfully chaotic with a lot of family. I better go help with the prep for our Indian themed Christmas meal!

I hope everyone has a wonderful holiday with family and friends and a lot of good food!

The ocean side of one of the B&Bs where half of us stayed. The pile of coral and debris was washed up after the hurricane.

We all made it!

The 2nd B&B where half the family stayed was two houses down from the 1st. It had a wonderful swing on the back porch where we spent a lot of time. 

Cuba!!

The Watson family is off on vacation! It's part Aruba lung celebration do-over, part Christmas celebration, and part taking advantage of David and Cindy being back in the Maritimes for a few months.

It's obviously my first Caribbean beach vacation since my transplant so I've packed a suitcase of sunscreen. I'll be the one on the beach in the shade or wearing pants and a long sleeve shirt because I'm terrified of burning. I burn so quick on my anti-rejection medication and I'm at such a high risk of skin cancer that sunning on the beach isn't a good life decision. I'm sure I'll still get plenty of sun when I'm snorkelling or around Havana.

I'm sure the vacation will be a lot of fun and super chaotic with 8 people making dinner decisions. Can't wait!

Toronto three year assessment

We had a great visit to Toronto. We had a quick nap after landing and getting to our B&B and then spent the rest of the day walking around the city. We visited the Kensington Market, all the fabric stores on Queen st., the athletic stores on King st., and then over to Younge to the game store. My feet were so sore by the end of the day. I had coffee with a friend in the afternoon and we had a great visit with family that evening and then I was up early for blood work Tuesday morning.

View from our B&B

I think Tuesday was the quickest appointment day I've ever had in Toronto. I took some knitting and managed to knit a total of two rows all day. Every department moved right along which meant I was able to leave between appointments and actually made it for breakfast at the B&B. 

I made it 698m on my walk test. So close to 700m! I may have gotten there if I hadn't detoured around the man lingering in the hallway. I should've run him over. Or maybe I shouldn't have spent Monday walking 11km on pavement. Either way, it's still up a bit from last year and I know I'm doing well physically so the physiotherapists were happy.

The doctor didn't have much to tell me. My x-ray looked good, my blood work is stable (although my cholesterol is still a tad high), and he was happy with my lung function test results. 

My lung function numbers were the same as they've been in Amherst which is up from last year's Toronto numbers. The doctor did not seem to think much of my "high" in June and July and said the change in percentage is all statistically similar. Boo to doctors crushing my highs! Although that does mean that I haven't really dropped since the summer which is a good thing. Maybe I don't need to jog as much as I think I do.

After the appointments, I had a nap and didn't want to go anywhere so Isaiah got us greasy Thai take-out for supper. We spent the evening eating greasy food, played the board games we bought, and watched X-men. 

On Wednesday we had a quick trip to the St. Lawrence market and the Distillery District Christmas Market before our flight home. 

It was a short and sweet trip! 

Great lunch spot! 

Christmas Market! Everything was adorable. 

Good-bye Toronto! Until next time!

THREE YEAR LUNGIVERSARY!

IT'S MY THREE YEAR LUNGIVERSARY!!!!!!!!!!! WOOHOO!!!!! Three years since a family made the decision that their loved one would be an organ donor and because of that, I'm alive today. Thank you donor family! Thank you also to everyone who has supported me over the years! Whether through sending me supportive messages, or playing games at the hospital with me, or feeding me, or sending Isaiah and I to plays, we appreciate all of it.

This last year has been fantastic. I ran a 5km in May, spent the summer hiking and camping all over the Maritimes, and was able to leave the country for the first time in years! And, unless something happens in the next month, this will be the first year in eight years where I haven't spend a night in a hospital!

Talking to someone on Twitter yesterday about my lung transplant experience made me realize that the trauma of three years ago is never going to leave me. I still remember waking up from surgery disorientated and panicked. The confusion and my crippling anxiety attacks during my recovery will always be a strong memory.

While the emotion behind the memories have softened over time (writing about it has been the most therapeutic thing I could have done), I hope I never forget how far I've come from before and immediately after my transplant. Nothing about a lung transplant is easy but everything I went through was worth it.

Before my transplant, I never dreamed that I would be now three years out and physically stronger than I have been in a decade. Or that I would be excited about buying a treadmill so I can exercise inside during the cold winter days. I will never be able to thank my donor and their family enough.


We're off to Toronto tomorrow for my three year assessment! It is one full day of appointments and no bronchoscopy (woohoo!). Just a lot of blood work, full work up of lung function tests, walk test, x-ray, and doctor appointment. Nova Scotia has stopped sending some people to Toronto for follow-up assessments after the two year mark if they've been stable. However, with my complications I guess the Toronto doctors wanted to see me, so off I go! I'm not complaining, it's a trip to Toronto!

My lungiversary present to myself was to drag Isaiah out in the cold to the middle of Elgin last week and have a photo shoot under the stars with the talented Alyssa Martin of Alyssa Martin Photography. The pictures turned out even more amazing than I had been hoping.

We're so tiny in this vast ever-expanding universe.

Discovering the history of diabetes

Last week I listened to the Memory Palace's latest podcast about Elizabeth Hughes and it made me interested in the history of diabetes research and treatment. Like most things, I've only become interested in diabetes research since being diagnosed myself. I was ignorant of how doctors use to treat people with diabetes before the discovery of insulin until last week.

Since reading about how the treatment has been developed, I realize that like most of the medicine keeping me alive, I'm lucky to be born in this era in Canada where double lung transplants happen on a regular basis and insulin is readily available.

Elizabeth Hughes was another person who, like me, was fortunate enough to be born at the right time. Unlike me, whose treatments have been around for years and have been studied and tested on those who came before me, was treated at the exact moment when insulin became available to the public.  

Diabetes has been known to doctors since 869 AD when the pancreas was discovered but no one knew what it did. Progress in understanding the body and diagnosing diabetes was made over the years as doctors recognized the patient's sugary urine and that food played a role but there was no treatment. The life expectancy after being diagnosed with diabetes was one year, if you were lucky. 

A major break-through happened when French physician Apollinaire Bouchardat realized his diabetic patients had fewer symptoms, and actually improved, during the food rations of the 1871 Franco-Prussian War. He developed specialized diets to try and curb the symptoms. Fasting became the new treatment.

Dr. Allen of the Rockefeller Institute in New York took the fasting idea to a new level where children with - what we would now call type-1 - diabetes were hospitalized and basically starved to death for their health. The life expectancy after diagnosis went from one year to possibly three as the children no longer died from their diabetes but instead starvation.

I can't imagine how hard it would've been for the doctors, nurses, and families to slowly starve their children to death out of a willingness to keep them alive an extra few months. All in hopes that a treatment would be around the corner. One child, having gone blind from diabetes, requested some song birds to keep him company as he wasted away in the hospital. His request was granted until he was found to have sugar in his urine and it was discovered he was eating the bird's birdseed as a desperate attempt for food. The birds were taken away and he eventually died of starvation.

Elizabeth Hughes, the daughter of wealthy US senators, was one of these patients admitted to the New York hospital in 1919, at the age of 10 under the care of Dr. Allen. She lived at the hospital for three years and weighed 45 pounds and was eating 405 calories a day by 1922.

In 1921, the breakthrough that everyone had been hoping for finally happened. Dr. Banting and Dr. Best (from Canada) discover that an extract from cattle pancreas lowered the blood sugar of dogs who had been given diabetes (by having their pancreas removed). This meant a supply of cheap insulin was suddenly available and it worked.

The first patient to receive an insulin injection was Leonard Thompson, age 14, at the Toronto General Hospital, on January 11, 1922. Not much is known about him but he, like Elizabeth Hughes, had been hospitalized three years prior, weighed 65 pounds, and was drifting in and out of diabetic comas at the time. His father agreed to the experimental treatment in an attempt to save his life. The first injection didn't do much to improve his health but the second, a more pure injection of insulin worked. His glucose levels were restored to normal and he lived another 13 years before dying from pneumonia at 27.

With that success, Dr. Allen rushed his high profile patient, Elizabeth to Toronto in August 1922, to begin injections. She responded immediately and began to eat a normal diet and gained her weight back. She died at the age of 71.

I feel for all the children who were starving in hospitals who would've died during that window from between when insulin was discovered to when it became widely available in October 1923. Only the families with contacts like Elizabeth were able to get treatment. 

Life is so delicate that the balance between life and death can be such a tight rope that we don't always recognize. It often just comes down to being born at the right time, in the right country, to the right parents.

I sometimes think of all the treatments and medications that are currently being developed and wonder if I'll be around when they become widely available. What treatment might I miss by a year or two that would have changed my life dramatically. And then I realize I need to be thankful that I'm alive in a time where CF treatments were available, and lung transplants, and chemotherapy, and, of course, insulin. 

I took it all for granted when I was diagnosed with diabetes and was given an insulin pen and a glucose monitor. I don't have to draw up insulin in vials, or check my urine for my glucose levels. It's all done with machines that have the capability of connecting with a phone to chart the results. 

Another part of the history of diabetes that I thought was interesting and had long-term effects on the culture of medicine for everyone was that diabetes treatment was one of the first times patients wrestled their care away from doctors. 

"The notion of allowing patients to test their own urine for glucose and calculate their own insulin doses was outlandish to most doctors. Diabetes was the first illness which forced them to cede some medical authority to the patient, said Jean Ashton, one of the exhibit’s curators. With insulin, diabetics suddenly acquired both the right and the responsibility to maintain their own health."
- New York Times, 2003




Sources for this blog post:

http://thememorypalace.us/2017/11/elizabeth/

http://www.nytimes.com/2003/03/16/magazine/the-way-we-live-now-3-16-03-body-check-the-bittersweet-science.html

http://www.nytimes.com/2010/10/05/health/05insulin.html?pagewanted=all

http://www.diabetes.ca/about-diabetes/history-of-diabetes

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.

Dehydrated

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!

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.

Ireland!

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.

Ireland!

I'm still in Ireland! Woohoo!

Happy Thanksgiving!!!

Happy Thanksgiving!! I hope everyone has an enjoyable time with friends and family eating tons of food!

I'm zooming off to Ireland today to see how much it has changed since I was there 11 years ago. I'm incredibly thankful that we're able to go on this trip and that Amy's lungs are stable enough to still travel. Must get in as many trips as possible while we're both feeling good enough - who knows how long this bubble will last. My first time out of the country in 5 years. Woohoo!

Here are some fall pics from the last week. We hiked both sides of the Wentworth Valley on Wednesday and while the trees hadn't really changed colour, it was still very pretty.

Pumpkins and squash at the local farm!

The view from Highhead (by the ski lift)

Happy Thanksgiving!

Urg a cold.

Happy October! I hope everyone is enjoying the crisp fall weather and the smell of dust burning off the elements as the heat turns on for the first time in months (or is that just my house?).

After working for three days in a row last week, I have developed a terrible cold. I don't think it was the actual work that made me sick but the increased exposure to people. More people means more germs. More germs means one sick Allison.

I seem to always have a bit of a freak out when I get a cold over if it's going to lead to pneumonia or rejection and how I'm now going to die from a stupid cold. I realize it's a overreaction but because there is a remote chance it could happen, I can't stop myself.

I spent the past few days drinking tea, napping, and reading books and now the cold has turned into a dry, irritating cough. A cough that wakes me up at 2 a.m. to remind me of the good times I had with my old lungs. I even had to prop myself up on pillows to sleep. So 2013.

Anyway, I hope this better all be gone by next week because Amy, Mom, and I are off to Ireland for a week and I don't want to be that sniffling person on the plane.

Crafts: Allison's Cards

I've been making a lot of paper piecing fabric cards in the past few months, I mean A LOT. I started making my own designs and trying random ones I found online because it's so much fun to do. I love that I get to be creative and have a little product at the end of it. With my abundance of cards, I decided I should sell them seeing as I don't have that many friends or reasons to send cards. I set up a little Etsy shop and so far I've sold one! I realize most people don't send very many cards beyond Christmas and Birthdays! Isaiah tells me that "Thanksgiving and Halloween cards are not a thing" to which I vehemently disagree. Cards for every occasion! Plus getting fun mail makes everyone's day much better.

It's been a lot of fun and keeping me busy coming up with new designs for various occasions. I'm quite bad at taking pictures of all of the ones I do though.

Here are some of the paper piecing designs I've made over the past few months:

Autumn tree!

Meeple! For board game lovers.

Tiny Pumpkin!

Garden gnome (pattern I found online)!

Birthday Bee (pattern I found online and modified)!

 

 

 

Here's the link to my Etsy store if you want to look at a few of my other designs! It's all fairly basic because I have no idea what I'm doing but the "Starting a Etsy Store for Dummies" book I got from the library will soon change all that!

Dermatology appointment

I had my dermatology appointment and I don't have skin cancer! It was a pretty quick appointment. After taking a medical history (always the longest part), the doctor looked me all over and said all my freckles look normal. She then gave me a list of approved sunscreens and pamphlets of things to look for that had with terrible pictures of skin cancer on them and booked a follow up in a year.

While the most common skin cancer in the general population is basal cell carcinoma, with people on anti-rejection medication, we are more likely to get squamous cell skin cancer. Squamous skin cancer develops from actinic keratoses or "sun spots." The spots themselves aren't cancerous but the doctor said she would want to treat me because there is a strong likelihood they would turn into cancer. She also said that they treat squamous skin cancer very aggressively because it can be fast moving and spread other areas.

All in all,  I need to be on the lookout and check my skin every once in awhile. If it's caught early, it's very treatable. And to wear sunscreen every day, even when it's cloudy. The grocery store was clearing it out so I stocked up on some nice face stuff.

Doctor appointments

I had my fourth month hematology check-up on Thursday and I still don't have cancer! Woohoo! That's what I expected to hear because my blood work has all been normal the past few months but it's still a bit of a relief every time. I'm hoping at a certain point my fear of recurrence will go away but I'm not there yet. It feels a bit silly to celebrate the lack of something but that's where I am in life. Everyone should take a moment to celebrate any day they don't have cancer.

I have my first dermatology appointment this week. I've waited 8 months for this appointment. I'm so accustomed to jumping the line for doctor's appointments that waiting like a healthy person is unusual. It's just a consult appointment as every transplant patient is suppose be followed by a dermatologist. The prevalence of skin cancer is high post-transplant thanks to all the medications. I'm pretty good at wearing sunscreen every day and not lounging all day in the sun but my years of being stupid about sunscreen as a teen combined with my now superhero ability to burn after 10 seconds outside could catch up with me. It'll be nice to have a baseline consult. Plus I'm looking forward to pointing out all my random skin bumps and have her tell me what they are.

PEI

Last week we spent the beautiful week on PEI in a cottage near Morell. We keep returning to the same beach because it's a perfect sandy beach with amazing sunsets. Plus it's close to the Confederation trail which makes it great for cycling to St. Peters. We spent the week biking, kayaking, and swimming.

I hit my 500km summer cycling goal during the week! Woohoo!

Since getting home on Saturday, I've spent the last two days relaxing and sitting in silence after the intense family week.

Sunset over the water.

Off we go down the trail!

Playing in the waves.

Cycling selfie at Brackley Beach (Isaiah always yells at me when I have my phone out while cycling along).

Greenwich National Park!

Kayak in the calm ocean.

Our one and only bonfire.

Family kayak trip down the Morell River.

Goodbye PEI!

Cooking: Spiced Kale Shaksuka

I thought I would share this recipe I tried last week. I randomly flipped through the Impatient Foodie cookbook by Elettra Wiedemann when it came into the library and the recipe caught my eye. I made it during one of the cooler rainy days when I actually wanted to be cooking instead of just throwing stuff on the bbq. The author also apparently has a blog that I had never heard of but looks like it has some interesting ideas for vegetarian meals.


The recipe is for Spiced Kale Shaksuka. It's a great way to use up any greens and/or tomatoes you have around.

The cookbook. No other recipe really grabbed my attention so back to the library it goes.

What it's suppose to look like.

Ingredient list. I used beet greens instead of kale because that's what we had. I didn't chop them up super small and Isaiah complained that it wasn't very scoopable with the long stems. So next time, maybe I should actually follow the recipe. I cut the recipe down a bit and used 4 eggs because 6 seemed like way too many for 2 people and poached eggs do not make good leftovers. The recipe says it serves 6 and uses 6 eggs so I guess we eat more than we should.

1) Not browning garlic is very hard. 2) It took longer than 4 min for my eggs to poach in their little wells. Maybe they weren't deep enough? It took about 6 min and I peaked many times after the first 4 minutes. It did not ruin anything. 3) I cooked everything in a mid-size pot because I thought it wasn't enough food for a 12-inch skillet when I cut it by 1/3. It probably would've been fine in the skillet but the pot worked great too.

Yum!

Served with hamburger-type buns. Great recipe for when you're craving eggs but want more than eggs and toast.