Friday, 30 December 2016

It's my birthday!!!

(As part of my attempt to become somewhat of a writer, I wrote the following short essay and pitched it to several websites but never got any response. Because I still like it, I'm posting it here even though I'm sure you already know all this information.)

I turn 30 today. I'm so happy, I had serious doubts that I would ever reach this point. When I turned 25, I wished to be able to make it to my 30th birthday. At times I wasn't sure if I would make it. Yet here I am, turning 30 and loving every second of it.

I was born with cystic fibrosis, a degenerative genetic lung and digestive disease and stayed relatively healthy until I hit my 20s. Then my lungs started to decline. I spent my early 20s in and out of the hospital getting IV antibiotics for infections and fighting off pneumonia.

Shortly after I turned 26, I was told that I was no longer healthy enough to work. That if I took my planned trip to Spain that I would, “return in a body bag.” My lungs were spent out and my only chance of living much longer was to have a double lung transplant. Lung transplants are considered 'end of life treatment' for people with cystic fibrosis as they can extend the life but are such a high risk surgery that are only done when there are no other options.

I spent a lot of the earlier part of the year being scanned, probed, and interviewed. Then waited for doctors to decide if I would be eligible for the chance at a new set of lungs, for a transplant that could extend my life.

I was deemed eligible as the rest of my body was relatively healthy, so I moved to Toronto with my partner, Isaiah (as no one does lung transplants in Eastern Canada) and spent my 27th birthday in our tiny one bedroom apartment waiting for the call that lungs were ready for me. Waiting and wondering if anyone who was an organ donor, my blood type, and body size would die that month. Then feeling bad for pondering people dying but yet wishing I could get some new lungs soon as the cold Toronto wind gave me a coughing attack every time I stepped outside.

My lungs help up okay for most of 2014 as I hung out in Toronto and went to Blue Jays games and attended pottery classes at the Gardiner museum. However, in November 2014, after many hospitalizations and being on almost every antibiotic known to science, they were done. I got a blood clot in my right lung and struggled to walk to the bathroom. I was hospitalized and was told that if I didn't get my transplant within that week, I would be put on a ventilator as my lungs were barely holding on. On November 26, I got a set of beautiful new lungs.

As a result of the transplant and subsequent incision infection, I spent my 28th birthday recovering from a sternum removal surgery. My parents, living in NB but visiting as often as their jobs would allow, sent me balloons. The hospital gave me a catheter for my birthday as the anesthetic from the surgery made it so my bladder refused to pee. Isaiah snuck cheesecake into the hospital for me.

I slowly recovered and made it back home to the Maritimes. I spent the rest of the year getting stronger until I started getting dizzy when I exercised. After many tests, I was diagnosed with post-transplant lymphoproliferative disorder (a type of non-Hodgkin lymphoma) in November 2015 and as a result, spent most of that winter in and out of the hospital. My 29th birthday was spent in the hospital with a shaved head and a fever after receiving my second dose of chemotherapy. Isaiah once again snuck cheesecake into the hospital. I spent the day sleeping and taking as much Tylenol as the nurses would allow.

And now, after a lung transplant, serious complications, and cancer, I've finally reached my golden birthday (or champagne birthday, as apparently some people call it). Turning 30 on the 30th. I couldn't be more thrilled and relieved. I seriously doubted many times that I would be alive at this point. I had my funeral planned.

Reaching 30 for me means survival. I made it. I survived. When I was born, the life expectancy of someone with CF was 40. Statistically, I should get another ten years. But seeing how hard the last 10 were, I'm not particularly confident I have another ten in my future. Only 50% of people post-transplant live for ten years. And only 50% of people who get PTLD are alive after five years. So the odds are not in my favour.

But that's okay, I'm taking life one day at time and getting everything I can out of it. I may have had some hard years getting to this point but have also had some amazing moments. I've been fortunate enough to have lived in Ireland for a summer, get two university degrees, travel all around Europe. I cycled across Canada and I have the most amazing friends and family who support me unconditionally.

I don't know what to expect after 30. I'm feeling healthier than I have in years but my life is not on the same track as what I imagined when I was 20. I'm not sure how long this healthy period will last so I'm going to enjoy it while it's here.

I don't know how many years I have left. I could die so easily from pneumonia, or transplant rejection, or the cancer could return. But it's not like any of us have a written guarantee of a long and healthy life.

So today on my birthday I'm going to celebrate and party and eat cheesecake because I'm so damn happy to be alive. I'll probably also be a bit of an emotional mess and may spend the day bawling over how lucky I am. And I hope everyone hitting a milestone birthday this upcoming year can celebrate with me. Embrace life. All of it. The struggle, the fun, and the boring parts. It doesn't matter what you've been through, turning older is a gift every time.

Wednesday, 28 December 2016


I got home from the hospital last night! After they got my electrolyte levels back to normal, they still wanted me to stay to make sure my antirejection levels were ok. That meant I sat around all day so the nurse could take my blood at 3pm. I kept hearing the nurses at the desk asking things like "Is Watson still here?" and "Why is Watson still here?" as I sat in their private ICU room not connected to any monitors. It was frustrating to have to wait but important to know if my levels were ok (they were). The nurses offered me the extra molasses to take home. I said no. Someone else can keep those memories.

Now that I'm home, I'm pretty wiped. Being in the hospital is exhausting and my body is trying to recover from not eating for over a week. Probably all the trauma from all the enemas, IVs, and losing 20lb of poo in one night has also made me tired. 

I don't have much else to say but just wanted to let everyone know that I'm home and recovering. I don't have much of an appetite for all the Christmas cookies and peanut butter balls I made earlier this month but I'm sure it'll come back soon. For now I'll just keep drinking tea and munching on crackers. 
What a fun place to be for the holidays.
Replacing all my electrolytes.
My arms are completely tapped out. They gave up trying to put an IV in the last day after the medic from emerg failed several times.

Monday, 26 December 2016

A Christmas Poop story (not to be read while eating)

Merry Christmas Everyone! I hope everyone is having a wonderful holiday with friends and food.

So I had a unexpected twist to my Christmas where I learned the true meaning of having a bowel blockage.

Last week I started having some indigestion but didn't really think much of it because I've been having more indigestion lately and it usually resolves itself in a day or two. I was still passing gas and a bit of stuff so figured it would clear up on its own. But then I wasn't able to really eat anything because I felt bloated so by Wednesday when nothing had cleared, I contacted my Halifax CF doctor who I had clinic with that afternoon to consult what to do.

After clinic and doing a x-ray of my stomach, she sent me home with two 4L jugs of peglyte and told me if after I drank those nothing improved, to go to my local hospital for an enema. I drank peglyte last year when I was prepping for a colonoscopy (that never ended up happening) so I figured it would go down about the same as then. Terrible but manageable.

When I got home that night, I drank two glasses pretty quickly and then hit a wall at the third. Every time I tried to drink more, I either spit it out or threw it up. So off I went to Springhill emerg to see if they could help me and they sent me on to Amherst.

The Amherst doctor immediately wanted an IV put in as I was dehydrated but after the nurses failed three times, they thought maybe it wasn't that important. However, after they did the enema and I started to feel faint and told them "I think I'm going to pass out," they got one in pretty quick. After some hydration I felt a bit better (at least like I wasn't going to faint anymore). I stayed in Amherst emerg that night and had another enema, but nothing seemed to help.

The Amherst team decided I was more complicated than they were ready to handle and that I should be shipped to Halifax. However, it was important to get a NG tube (nose tube) in to start suctioning stuff from my stomach. Having the NG tube inserted was one of the most traumatizing experiences of my life.

I had them in Toronto but they were inserted when I was either completely out or half-sedated. The nurse gave me a Ativan but I'm not sure it helped that much. She sprayed my throat with some freezing and I immediately began to throw up, before the tube was anywhere near my face.

I puked up a bit and it was brownish and I thought "that's weird, I haven't eaten anything brown lately" and then it switched to "oh god no, that's not what I think it is, is it? It can't be." And then I proceeded to internally scream "NOOOOOOOO this isn't happening" while I vomited for about 5 minutes.

The nurse calm explained afterward that if "there is blockage, the poop has to go somewhere."  So basically my stomach was full of bits of poop and it came out when she put in the NG tube. If that makes you want to throw up, it should. I'm so traumatized that everyone else should be too and I'm not even sure if that accurately describes the horror. It was so gross that it made me keep puking long after the initial reaction.

The nurse looked like she might throw up too but instead she shoved in NG tube up my nose and made me swallow it down into my stomach. Eventually things settled down and I got an ambulance ride to Halifax late Thursday night. I got a room in the IMCU (like a step-down ICU) and have been hanging out here ever since. I spent Thursday night, Friday, and Saturday getting enemas and having peglyte pumped into my stomach and then suctioned back out. I've also been stabbed so many times as the nurses try to get IVs into my poor veins.

Christmas, yesterday, the nurses decided that they were done trying the traditional enemas and switched to the old-school "a nurse on another floor swears by this" milk and molasses mixture. The hospital doesn't carry molasses so the charge nurse had to drive to the Needs convenience store, which happened to be open, for molasses and whole milk (apparently the hospital's 2% wouldn't do). They were all so excited and hopeful that it would work.

After two milk and molasses enemas, it was about three hours later when the nurse said she was going to get the stuff ready for a third one when I felt a promising movement in my stomach. I used the commode and it seemed like maybe, finally, things were starting to move. Twenty minutes later, things were definitely moving everywhere. I'm not 100% sure it was the molasses and think maybe it was just the passage of time or all the peglyte in my stomach but I spent the rest of Christmas Day and all last night on and off the toilet. (The nurses all swear it was the molasses)

It was Poopmas for me!

Not exactly the Christmas I had been planning. I'm still in IMCU for (hopefully) one more day while they top up all my electrolytes and make sure I can keep liquid down without throwing up. I was hoping to go home today but I guess they would rather be safe than have me pass out in their parking lot.

Through all this, Isaiah has been in Halifax with me staying at his Aunts place. The rest of my family stopped by for a visit yesterday on their way to the Valley and then again today on their way back home. We are now going to wait and do a Christmas when Mom and Dad are back from Montreal sometime early January. It'll be like Christmas never ends this year!

I hope your Christmas and Boxing Day were much less exciting! 

Friday, 16 December 2016

Lung improvement!

I had to venture outside in the -25 weather this morning for my lung function test in Amherst. As much as I hated to go, I liked the results. My lung function is up again! Hurray!! I like this new trend of increasing every month. I hope it never stops. My numbers at home are not consistent and not improving so it's really nice to check in every month on a better machine and get a happy surprise.

I don't know why the numbers are still improving. I suspect it may be all the jogging I've been doing (the rest of my body is not pleased with the news it'll have to keep jogging) because that's the only real thing that has changed. Or maybe it's just now that I don't have cancer and my lungs have healed, they're getting stronger. Either way, it's happy news.

Stay warm, everyone!

Tuesday, 13 December 2016

Book pitch

Yesterday I mailed out a pitch for my transplant story to a publisher! Eek!!

It was so stressful to write the cover letter and summary of the book. Thankfully Google was pretty helpful in advice on what to put on the pitch cover letter as I had no idea what I was doing. It's probably one of those things that they go over in writing seminars and other classes that I should be attending.

I feel like a real writer sending out manuscripts for people to read. Now to wait for six months to hear anything back.

I have it all written and am going through edits for what feels like the millionth time. And then I have to start cutting it down to be more in the word length of what publishers want.

If I don't hear anything from a few publishing places, I will self-publish it like Wanderlust. I just wanted to go this route first and see what happens. Fingers crossed!

Monday, 12 December 2016

Christmas Tree

We got our Christmas tree! We actually got it yesterday after returning from a weekend in Halifax before it started to storm. A bit different from the fake bamboo tree we had in our Toronto apartment. And much less work for Isaiah when he got the tree by himself last year when I was in the hospital.

This morning I made some star garland for the tree working on the 'make stuff from old books' theme that I seem to have this Christmas. Well, last night I painted the pages in red and yellows and this morning I cut out the little stars and taped them onto thread.

We put on our one Christmas album (Bonnie M Christmas) and decorated the tree. I think the garland turned out quite well and matches our ornaments as much as that's even possible.

My mess last night.
Close up of the garland once done.
The tree in all its glory!

Monday, 5 December 2016

Bronch results

I got a call from my transplant coordinator this morning. Except the calls are rarely actual phone calls. I may have mentioned this before but the communication post-transplant with the team is done through a messaging system called Easy Call.

The coordinator (or admin if it's a general message or appointment reminder) leaves a message on the system which calls every hour until you retrieve the message. Then you leave a message in response, and they'll leave a message in response to that message. So rarely do I ever actually talking to someone. It's just a series of messages where sometimes information gets confused.

Anyway, I saw that I missed a call so nervously responded. It's rare for me to get messages from my coordinator anymore so any unsolicited message makes me edgy. The system takes about a few minutes to get through with all the recorded "if you have a easy call number, press the pound sign" "If you are Allison Watson, enter your password." It goes on and on.

The entire time my heart was pounding and I was thinking "no rejection, no rejection, no rejection."  There were two messages for me. The first one being a general message about hospital cards that I had to sit through while anxiously waiting for the real one from my coordinator.

Then finally the real message rejection showed in my bronch!! Woohoo!!

However, the bronchial wash (where they pump saline into the lungs and then suck it back up to culture it in a lab and see what's growing ) showed the pseudomonas that came with my lungs is flaring up again so the doctors want to treat it. I'm not sure why as I'm feeling great but they've been doing this a lot longer than me so I'll shut up and take the antibiotics. I don't think the bacteria is ever going to completely go away but I guess it doesn't hurt to try and suppress these flare-ups before they get out of control.

But who cares about that, there's no rejection!!

Friday, 2 December 2016

2 year assessment

We're back from Toronto! After getting home at 7pm on Wednesday and working all day yesterday, I'm having a lazy day of card writing and relaxing.

Our visit to Toronto was good, we stayed at our regular B&B close to the hospital. It's so convenient and next to really good restaurants. 

Monday was my appointments day. Starting with bloodwork at 7am, lung function tests at 8am, CT scan, x-ray, and 6 min walk test all before 10am.

My lung function was the same as it's been in Amherst and my 6 minute walk test was about the same as 6 months ago. I was a bit annoyed by that. I thought I would have improved with all the jogging and exercising I've been doing. Not that I'm a speedy jogger or anything but I feel like I'm stronger and in better shape than 6 months ago. Why didn't that translate to being able to walk quickly?

So many laps up and down this hallway. Almost running into slow walkers.
After my walk test, we had a nice break for lunch before the clinic appointment. We walked around Kesington market and Chinatown and window shopped at all the stores.

The clinic appointment was quicker than expected, under 2 hours! The doctor didn't really have much to say except that my CT scan was better than 6 months ago which is excellent. And my cholesterol is still high so she prescribed medication since I'm clearly unable to control it through diet and exercise. High cholesterol is a side-effect of the anti-rejection medication so she said it's usually quite hard for patients to bring it down on their own. This means a few extra bloodwork tests when I first start the medication to make sure that my liver is doing okay (as it's hard on the liver) but no real other side-effects.

I talked to the doctor about all my concerns with the bronch the next day but seeing as she wasn't the one scheduled to do it, there wasn't much she could do about making sure I had more medication. She said a lot of stupid things like "have you tried relaxing techniques?" and "most people don't panic" but did send a email to the doctor on the next day to convey my concerns. Then we were out of there and had the whole night to relax and drink hot chocolate.

Soma hot chocolate! So good!
The bronch on Tuesday was actually ok! It wasn't until 1pm so I was quite starving and anxious all morning. It took the nurses 4 tries to get the IV into my terrible veins. Then to the freezing room to gargle the freezing juice and do the aerosol freezing mask.

Freezing the lungs.
Before I went in to the actual procedure room, I mildly freaked out (meaning I started crying) to the doctor needed me to sign the consent and she was very good with my freaking out. She said I was basically at the highest dose possible without having an anesthesiologist or stopping my breathing. But since my concern was that I wake up toward the end of the procedure and don't get put back under and panic, she agreed that she would space out the medication more and re-dose me when I woke up. 

The sedation medication for a bronch are funny because they don't make me drowsy before I get knocked out. I feel wide awake one second and am out the next. There's no gradual relaxing feeling like there was when I had my wisdom teeth out or when they did my sternum surgery.

I woke up in a panic but they were thankfully all done. It still took me a few minutes to calm down before I went to the recovery room but overall, it was much better than before. After the 'make sure there is no air outside of your lungs' x-ray, and a chat from the doctor, I was good to go. The doctor said afterward that while it went okay, she would recommend that I be put completely under with a anesthesiologist next time I need a bronch. Fine by me.

So that was my last bronch for awhile! No more until I get rejection or something else goes terribly wrong. I don't have the results yet but hopefully will find out if they find any infections or rejection within the week.

I had a solid two hour nap after the bronch and by the time I woke up at 6pm, I was starving after not eating all day. We never made it to the Christmas market as I was feeling spacey while walking around the block on a quest for extra food (I ate all the Chinese leftovers from Monday night but was still hungry, I found a tacos). I didn't think it would be that much fun to go to the market only to space out and be tired.
Goodbye, Toronto!
Wednesday, we walked to the airport where I drank the free cappuccinos to mend my throat from the bronch while we waited for our delayed flight. Then arrived home to a foot of snow and a freezing house. Welcome back to Nova Scotia!