5 year lungiversary!!!

In a week it's going to be my 5 year lungiversary. 5 years!! I can barely believe it. 5 years since that night in the hospital when the nurses came to tell me that there were donor lungs for me. 5 years since I wasn't sure if I was going to live for another few weeks. 5 years since I was too tired to brush my teeth or get out of bed.

If you had told my past self that five years after my transplant I would have gone to a surf camp in Hawaii, bought a house, and be working an almost-full-time job, I wouldn't have believed you. 

Or that I would have travelled to Europe and had a book published, I still wouldn't have believed you.

Our cute little house!

I never thought I was going to get five years out of my donor lungs. I mean, I hoped I would but I never let myself believe it was possible. Especially with the mess that happened during the first year after my transplant. 50% of people post-double lung transplant live for five years. 50% of people who develop post transplant lymphoproliferative disorder are alive after two years. I've been unbelievably fortunate.

I'm not going to list everything I've been able to do because of my donor as the list would be endless. The first item on that list though is “breathe.” Just being able to breathe. Breathe in cold air without my lungs seizing. Breathe in humid air while showering which I no longer dread.

After 5 years I remain grateful that I can walk up stairs without wheezing. I can sleep without needing 3 pillows to prop me up. I can laugh without having a coughing fit afterward. I can stop worrying about how many calories I'm consuming and not have to supplement my diet with Boost or Ensure.

(So much for not starting a list.)

I know everything I'm saying I've said before but it's just so amazing to be reaching this milestone. Alive and not spending all my time in the hospital. After my rough start, I'm not very high priority for any of my doctors anymore. I still have quarterly checkups with my respiratory team but my hematologist has pushed me to annual appointments and will most likely kick me off her rotation soon. I don’t even have to go Toronto this year for my annual appointment which I’m a bit sad about because I love being a tourist in Toronto for a few days. I’ve been deemed stable enough that all the annual tests have been done in Halifax. The only new medical process that happens at 5 years is that they start regular colonoscopies because the risk of colon cancer is quite high. So that’s...poopy.

The risk of skin cancer also increases significantly at 5 years  and although I’ve been followed by a dermatologist since the transplant, I need to become more diligent about sun protection.

There's still a small part of me that keeps waiting for the metaphorical health shoe to drop. I get up in the morning and put on a fun dress, make a giant coffee, and go to work and think “this is too easy” or “when is this all going to change?” I know it's not necessarily rational but it's hard to shake off the feeling like something bad medically is about to happen as soon as I've gotten parts of my life together.

Hiking Cape Chignecto!

I wish I could just relax but it's also that paranoid part of me that keeps me from taking too many risks and reminds me to stop and prioritize my health. I am, and will forever be on my anti-rejection medications which lowers my immune system and leaves me vulnerable to catching any bacterial or viral infections. The medication is to prevent organ rejection – if my immune system were healthy, my body would start attacking my lungs and we don't want that. However, having a lowered immune system means I have to be cautious about getting an infection. I know people who have died post-transplant after contracting the flu virus so the seriousness of infections shouldn't be minimized (get your flu shot!).

Because of this, I avoid people who I know are sick. I wash my hands a significant amount. I nap when I'm tired. Isaiah gets to eat any and all sketchy leftovers from our fridge. I worry about catching the measles whenever there is an outbreak anywhere nearby (as in anywhere east of Montreal). The fear keeps me cautious even though I know I can do everything right and still catch something that could kill me.

But being careful isn't why I've managed to avoid organ rejection, people get rejection for many reasons and I don't want you to think that it's brought on by the person's own actions. It's a thing that happens and I suspect it'll one day happen to me.

And when it does, I’ll deal with it at the time. Life is too short to worry about hypotheticals although it’s much easier said than done.

I kept trying to wrap this up with some tear jerker story about all lessons I've learned in my bonus time on this planet. But what is there to say that hasn’t already been said? Basically, life is short and precious so love deeply, take risks, and follow your dreams.

And while that’s true, the reality is that part of me living every day to the fullest means sometimes I spend way too much time on the couch eating chips, watching TV, and scrolling through social media. Downtime is also an important part of life that's often overlooked but that's a rant for another day.

There’s no possible way for me to distill my gratitude for my donor, their family, my health team, the transplant team, the medical system, and my support network into a simple phrase except to say Thank You. Thank you to everyone who has been there for me and my family. You’ll never know how much your messages and letters meant to us.

Next week I'll officially be 5 years post-transplant so on Saturday Isaiah and I are hold a house warming party/5 year lungiversary (everyone welcome!). On the actual 26^th I'm taking the day off so I can sleep in, have Isaiah make me a fancy breakfast (he doesn’t know this yet), and spend the day with my loving family to celebrate being alive.

5 years. I never believed it would happen. 

New job!

After years of saying that I wasn't looking for work more than the one and half days a week I was doing at the library, this week I'm starting an almost-full-time job at the desk of the Mount Allison Library. I'm both nervous and excited. It's going to be a huge change for me, working five days a week, having to wear something other than sweat pants, not being able to nap whenever I feel sleepy. Now it'll be all professional clothes, commutes to work, and probably an increased caffeine addiction along with everyone else. I'm excited about the actual job itself – more responsibilities, new computer system to learn, a university setting – and am mostly concerned that I'm not going to have the stamina for a five day a week position.

I'm going to have to be pro-active about putting my health as my top priority and realize that everything else will have to take second place. Especially for the first month when I imagine I'm going to be quite tired while learning the new position as well as the energy required in just being at work five days a week and moving more.

So I've been meal prepping all week, baking bread, making mini meatloafs, and freezing calzones that I can just grab and go for a solid meal. Isaiah would normally happily cook meals for us but he got Bell's Palsy last month and has been off work due to his very slow recovery. He's going back part-time this week but he's still unable to close his eye or chew food. Needless to say, he's also going to be quite tired for a few weeks.

I had always thought if I was going to switch jobs it would be more for maybe another part-time job or for a rec position but this one came up and Isaiah convinced me to apply even though I was positive I wasn't qualified. I figured it wouldn't hurt to apply and if nothing else, I would have updated my resume and then, to my surprise but not Isaiahs, I got a job interview. I wasn't hired for the actual job that had been posted but for a very similar one that is considered a 'temporary' position. So after next April, I may not have any job but at least I'll have tried something different and I'll know by then if I'm comfortable and healthy enough to work more hours.

You may be asking “but why would you take a job if you don't know that you can do it?” and the answer is “because I want to know if I can.” I'm almost five years post-transplant now and I want to push myself a bit and see if I'm ready for it. If I am, that's great. Once this job is over, if it's not renewed than I'll know I can start looking around at other positions. If it's a disaster than that's an answer as well. I'm really trying my best to recognize that this may not work out for me and that's okay. Sometimes it's enough just to see if it's possible and learn that it's not. Or so I keep telling myself. Eventually I'll believe it.

Word on the Street!

This past weekend I participated in Halifax's biggest book event, Word on the Street. It's the event's 25th year and while it use to take place on the waterfront, it's now in and around the Halifax Central Library. Friday night I attended the welcome reception for the authors and exhibitors on the beautiful 5th floor where we ate delicious canapes and sipped wine as the moon rose over the Halifax harbour. If you've never been to the library, the view alone from the balcony is worth the trip. It was a fun night even though I'm not great at mingling or inserting myself into conversations.

My room!

Saturday was the main event where I did a quick book signing at the Nimbus tent and presented as part of a "Life Stories" time slot and then had another quick book signing in the main signing area. I thought I would have more time to attend panels but all I managed to do between events was grab a quick snack. I did manage to attend a panel at the end of the day about romance writers of Atlantic Canada which was motivating to me to keep writing the romance novel I've been picking away at.

The event had a great energy to it and while I'm pretty sure I spent more time chatting to other authors than the general public, it was a fun day that required a 2 hour recovery nap once I got back to where I was staying.

So many good authors!

It's me!

It's the beginning of August and Mom and I haven't been on a single overnight hike yet! We're hoping to fix that this week but last summer we had already done three major hikes at this point, including the Fundy Footpath. I know I'm not suppose to compare summers and this year Isaiah and I actually made it to Yarmouth for a week which was great. Also, on the days we had planned on hiking, it rained for three days straight or was 30+ degrees so we wimped out. I'm hoping it remains nice enough into September that we'll be able to go before it cools off too much.

Last week, we spent several days in Mount Carleton hiking, paddling, and looking for moose. Amy and I also spent a lot of time sitting in the shade, dipping in the lake, and drinking iced coffee because it was too hot to do much else. Odin had some practice kayaking and only jumped out once on our first trip. After that, he stayed in the kayak although there were a few iffy moments. I'm not sure Mom and Dad are eager to talk him on a long paddle but he did well going around the lake. The massive amounts of treats he got while he was sitting nicely probably helped.

Odin with his little saddlebags before the hike.

Odin surveying the lake for ducks while I keep us upright.

Our cabin!

Yarmouth!

Isaiah and I had a mini vacation in Yarmouth last week. We stayed at the cabin, swam in the lake, playing many many games of crib, and visited with Isaiah's family. I had a book event with the Yarmouth Coles on the Saturday (called The Spirit of Litera-Sea"). It was nice to chat with other authors who have books out right now and to meet the welcoming, friendly staff at Coles. They said the turn out was better than last year, it was a bit of a rainy/muggy day so that probably helped as well as having all the authors talk on the local radio about their books. All in all, a great time on the other side of the province.

A photo gallery of things we did in Yarmouth:

Played Duck Hunt and Mario World 3

Read

Walked on the beach

Floated in the lake

Book fest!

S'mores!

Temperature Quilt

My temperature quilt is coming along! I'm deep into the yellows and oranges now. I haven't sewn up the latest strip yet but this past week will introduce the first reds of the quilt (high of 25+). I hope we don't end up getting too many red days this summer because I really don't handle them well. I never seem to be able to keep up with how much salt I lose. At least the house stays relatively cool and I've been able to spend the past few days in front of a fan.

Mid-May 

Until mid-June!

The CF nurse in the respirology department of the QEII is retiring and Amy and I are sad. It was her last week this past week - coincidentally when Amy and I both had clinic appointments so we were able to say a tearful fair well. Well, to be realistic, I said goodbye as she was giving me my pneumonia vaccine booster.

She's been the nurse at the adult CF clinic the entire time we've been there. We switched over from the children's IWK CF clinic at some point in our teens. I think Amy had aged out of the hospital but they let her stick around for a bit longer so we could both go to the adult clinic together rather than having different clinic days. I think I was given the choice if I wanted to stay but it made sense to switch over together to minimize the driving for Mom and Dad.

We've been with the adult clinic team in Halifax since leaving the IWK and while physiotherapists, social workers, and psychologists have come and gone, the doctors, nurses, and dietician have stayed the same almost the entire time. The dietician we had had for over 15 years did retire last year but her new one is fantastic and I'm just as comfortable complaining about my diabetes with her as I was the other one.

The new nurse is going to have their work cut out for them. I email or call anytime I feel like anything is wrong and it's always the CF nurse who gets the initial call. Or I'll call to check my blood work, or to change an appointment date, or if my lung function is down a bit. Basically, I've reached a point in my life where I'm trying to stay on top of any health issue and that involves a lot of calls to the CF clinic. The great part has been that I've always felt comfortable contacting them and am always listened to even if it's just to tell me that my magnesium is low. And if I email about every little thing, I imagine everyone else in clinic does as well with all of their questions.

I don't want to say that the nurse is irreplaceable but it's going to be hard to find someone who is as carrying, and compassionate, and no nonsense, and efficient. She's been there with me through it all, all my hospitalizations, my feeding tube, my transplant work up, my cancer diagnosis, basically the last 15 or so years. It's not going to be the same clinic without her.

With the chaos of my book being released and having a second launch in Halifax last week, The CF Walk has totally snuck up on me. I attended today with Amy - although we mostly just stayed inside where it was dry. As usual, if you would like to support CF Canada through the walk, here is the link. Isaiah was working this year so it was just Amy and I who attended. I sold a few books and we took zero pictures.

I know I haven't been writing much, May involved a lot of driving around the area but now most of my major book events are over. I have one reading in Amherst on June 4th and then nothing scheduled until a festival in Yarmouth in July. I do have a  CBC interview block on Tuesday for 4 hours and will be doing between 12-15 interviews in that time frame. I should be a pro at it by the 6th interview, right? I think it'll be fun but also hard on the brain. I'm not sure who I'll be interviewing with - I assume it'll all be local stations but I'm just guessing. I'll find out more on Tuesday. 

Author talk at the Springhill Library!

All the book events have been fun but very tiring. Between the exposure to so many people and the energy it takes to socialize with everyone, I've been resting a lot between events. Thank you to everyone who has come out to support me, I really appreciate it and it's been a lot of fun.

Book signing at the Moncton Chapters!

Halifax launch at Open Book Coffee.

Thank you to everyone who came out to the book launch! It was a tremendous success! Below are pictures of our decorations and a few of that night.

Flowers from Mom and Dad's house

Reading part of my book.

Totally not staged after the launch.

Pressure to spell my name right!

My official book launch is on Wednesday!

Ahh! I know the book has been out for a few weeks now but this will make it so much more official. Everyone is welcome! Representatives from Chapters will be there to sell copies of the book and we've made cookies. Drop in anytime from 6:30 to 8:30.

It's in Petitcodiac, not Hillgrove! Blame Google on having the wrong address listed.

Happy Easter!

Happy Easter!

We went home to the parents for the weekend although are back now (mid-Sunday) as Isaiah has to work bright and early on Monday. I hope everyone got some delicious food and chocolate.

I've been planning events for my book which has been exciting. Feel free to come to all or some of them! You can see over on my facebook page but so far I have:

May 8th, Official Book Launch, Petitcodiac Baptist Church, Petitcodiac NB, 6:30pm to 8:30pm
May 14th, Author Reading, Springhill Public Library, Springhill NB, 7pm to 8pm
May 18th, Author Signing, Chapters, Moncton NB, 12pm to 2pm
May 22nd, Book Party, Open Book Coffee, Halifax NS, 6:30pm to 8pm
June 4th, Author Reading, Four Fathers Library, Amherst, NS, 7pm to 8pm

I also did a radio interview for NEWS 95.7. If you want to hear me talk about my book, click HERE and scroll down to April 16 - 10 a.m. and the interview starts at 33:15.

ALSO, if you want to read an except of my book, you can do it at Atlantic Books Today HERE

I'll do my best to keep updating as things progress!

Book Launch!

I've started planning my book launch party! It's happening in Petitcodiac, NB at the Baptist Church on May 8th at 630-830pm in their new River Room. Everyone is invited, feel free to drop in and grab a snack or stick around and socialized. I went home over the weekend and we made some cookies shaped like lungs and didn't eat all of them. Only a few that we screwed up.

I'm working on my talk, trying to refine it so it will make sense instead of everyone listening to me talk in circles. I've warned Isaiah that he gets to listen to it about 15 times from now until May. He seems less than excited.

Generally, everything is moving forward with the book, copies have arrived at the Nimbus warehouse and I received my author copies in the mail! It's happening, books will be in the stores (if not already)!

Transplanted: The book trailer

I made a book trailer for my book! I spent a long time messing around on iMovie trying out different iterations and templates. I kept sending versions to the family asking for their opinion which I'm sure they enjoyed but after the 5th send of 'is this better? Do you like this one better than the last one?' I think they got tired of the emails.

I hope you enjoy! I feel like it captures the spirit of the book fairly well. A month to go!

Sewing!

I've been sewing a lot this winter, some cards for friend's birthdays but mostly I've been on a bag making kick. It's been fun, although frustrating at times. It's nice to have projects for days when I've been too sick to do anything active (I'm on aerosol masks now which I'm hoping will clear my chest for good) and there is only so much I can read at one time.

The bird fabric is a piece Mom brought home from New Zealand for me that I had put in a drawer and forgotten about. I'm always scared to use the fancy fabrics but this bag does it justice.

A messenger bag that's practical.

This is more of a gym bag that I've been using to tote my stuff back and forth from pickleball.

And a pic of my 'weather quilt'. I hope we're moving onto more yellow days!

I posted this on my author facebook page (which you should follow if you aren't already - look up Allison Watson - Author page and there will be a smiling picture of me). I think it bears repeating because I find this article and the pilot project of allowing people to fly to Toronto when lungs are available so interesting.

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There is a new pilot project that Nova Scotia is trying where people waiting for lung transplants are able to wait in Halifax and fly to Toronto when lungs become available. It has been successful for one woman, profiled in this article. The risk of not getting a flight due to fog or not being allowed on the plane due to low lung function seems high to me - airlines are allowed to deny you a flight if you are too unhealthy - but clearly it can be worth it for people with a low, but stable, lung function.

Before you ask, it's unlikely Amy would ever be eligible for this program due to people with CF having a tendency to have their lung function dramatically crash. Unless she somehow has access to a private jet that she's never told me about.

The ex-vivo machine discussed in this article is an amazing technological breakthrough. My donor lungs, four years ago, were in the ex-vivo machine for a time. The machine is beneficial, not only for allowing lungs to survive longer outside of the body but also to be scrubbed of any infection before transplant. Last year the Toronto team successfully started transplanting lungs infected with Hep C which would have been unthinkable years ago. The more lungs that can be used for donation, the less chance there is of people dying while on the transplant list.

Link to the article:

https://newsinteractives.cbc.ca/longform/the-breathing-machine?fbclid=IwAR1DXt2Xwrn3jZhDJodNtaDRaT0mqhjpCYfp392BzOoIogRL6hCia2lXvjU

Five Feet Apart Movie

A lot of people have been asking me what I think about the new movie Five Feet Apart, about two teens with CF falling in love. The girl likes to control everything she can around her CF and the boy is all about living carefree. They are hospitalized at the same time and fall in love. But they can't be within six feet from each other due to the risk of cross contamination. Will love conquer all!?

I haven't seen the movie or read the book so don't have an opinion on the movie or book itself but I think that it's beneficial for CF awareness to have a popular teen movie in theatres. If people are more aware of what CF is, and are willing to help financially with CF research, I'm all for it.

I know some people are upset about people with CF being only portrayed as 'tragic' with people spending all their time in the hospital but that's what happens with there is only one mainstream movie about people with CF. It's not possible to tell everyone's story in one movie or one book.

If anyone has seen the movie or read the book, I would love your opinion on it!

Ever since Christmas I've had an infection that has increased and decreased in strength depending on the week but it's never really gone away. Or maybe I did get over my Christmas cold but a week later I was sick again. This has not been my winter for staying healthy. I'm paranoid about being near people who are sick but it's hard to avoid everyone.

This latest round of infection went directly to my chest and has stayed there for about a month now.  I started on antibiotics almost immediately but since I still have a deep cough that isn't clearing up, I'm now on increased levels of prednisone for 10 days. I'm always on a bit of prednisone but now I'm up to 30mg a day which is a lot. For reference, I was on 20mg immediately post-transplant and had to be on 50mg for 5 days during each of my chemo cycles.

I'm six days in and I'm starting to feel the full effects of the steroid. My blood sugar levels are high, my appetite is through the roof, and I spend the afternoons quite jittery. I hope this works to get rid of the cough because the next step is probably aerosol masks.

Thankfully my energy bounced back so I've been able to still be active and mostly do what I want, it's just this cough that I can't seem to shake. I'm extra paranoid when my immune system is lower that I'm going to catch something else. Speaking of, I got my shingles vaccine last week so at least I won't be catching that from anyone any time soon. My doctor had to convince the pharmacist that it was necessary to give it to me. She was quite hesitant because I'm under 50 but after several phone calls I finally got it. It's generally not a life or death viral infection but I've read it can be quite painful so it's best if I can avoid it if possible.

Kouchibouquac

Happy long weekend! I'm spending the weekend reading through the proof of the book to finalize all the changes and try to make sure there isn't anything I've missed - hopefully nothing too major. I've read through the book so many times that I feel like my brain just blends it all together at this point.

Last weekend, we went to Kouchibouguac for a bit of a mini vacation, rented a cabin beside the park, and went snowshoeing and rented fatbikes. There was no snow in Springhill or Moncton and we drove up in the pouring rain so we were nervous about the conditions. Thankfully, there was still snow in the park. It was a bit icy the next day after the rain but there was enough to enjoy.

The fatbikes were lighter than I had pictured them being and while it was a workout to bike in the snow, it wasn't too bad. My legs were tired but mostly because I haven't been on a bike since last summer.

Whee!

Amy sent up her camera with Mom and Dad (she wisely stayed home out of the wind) so I could take pictures while everyone else sat in the car. Dad and I went out and took some snowy star pictures after the sun went down. The advantage of winter is that you don't have to wait until 11pm for the stars to all come out, we got back to the cabin in time for Dad to catch the last of the Leafs overtime game. The disadvantage is the risk of frostbite while standing around taking the pictures. 

Eagle on the river!

Frozen ocean.

Happy February! I recognize I've been MIA the past few weeks. I have finished my book edits and they're off to Nimbus! Now the Nimbus editor reviews everything, adds the pictures, and does more edits (mostly for spelling mistakes).

January seemed to fly by with working on my book and promotional information. I made it downhill skiing once at Wentworth and cross country skiing a few times before we lost all our snow. I'm hoping it will come back but only in small amounts at a time so I don't have to shovel too much.

It seems like I spent most of the time trying to get over the cold I got at Christmas. I tried to be paranoid by washing my hands a ton but I still got sick. And it has lingered on for weeks. And then it rebounded or I got another one last week that really knocked me out. It's basically been a month of getting my energy back and then losing it again.

I know this isn't much of a blog post but I just wanted to say that I'm still here. 

Happy New Year!

Happy New Year, everyone!

It's the time where everyone reflects on their past year and thinks about plans for the next year. I had made some goals for last year, most of which I failed to complete.

I had set a goal to improve my handwriting and I had some success in that. I got out many books from the library on calligraphy and did all the practice sheets. I made some success and made some pretty cards. However, writing like that is so slow so I don't do it very often.

My physical goals went okay, I did yoga frequently. The yoga with Adrienne Youtube channel put out monthly schedules which really helped my motivation. I didn't cycle 500km this summer, I found it much too hot in July and August to go out very long but I did get in over 300 km (mostly all in June).

I also didn't get my 50 days of hiking in, I was 9 days short. However, I did some very long overnight hikes which I think made up for the fact that I didn't do a lot of shorter hikes. It's hard to know when setting a goal in January what the summer will be like.

I've set some goals this year as well. I would like to finish a fiction manuscript, I haven't had much practice writing fiction so it's a bit of a stretch for me but I would like to try. I have so many ideas and figure it's better to put them on paper rather than to continue to think about it. At least I can say I tried.

Physically, I'm sticking with my daily yoga and a  goal of 500km of cycling in the summer, hopefully it will be a bit cooler to be outside.

I've also started a "temperature quilt" where I sew a certain colour square depending on the temperature outside. I have a range of colours depending on the temperature and I hope by the end of the year I'll have a fun spiral rainbow quilt. Some people do it by crocheting a row of a blanket each day but I'm trying to limit buying new crafting supplies and I have a lot of fabric. We'll see how it goes.