Thursday, 30 July 2015

Back on magnesium for me.

My PFT's are fine! They were back up today vs two weeks ago and pretty much where they were four weeks ago. I'm officially saying that my shortness of breath while exercising on Monday/Tuesday was due to humidity and that humidity sucks. There was a massive thunderstorm Tuesday night which cleared everything off and I feel better overall. Mom and I went for a long kayak yesterday morning and my only issue is that my shoulders burned.

I was informed by my coordinator today mentioning that my magnesium level is low and that since I already take magnesium, I need to up my dosage. She couldn't figure out why it was low seeing as I'm on magnesium and it's something that we need to monitor.

Soo....I had to return her message with a very sheepish call saying that it's perhaps maybe low because I'm really bad at taking it. It's a lunch/supper pill and I forget it all the time. Plus it sometimes gives me a stomach ache so I have a bit of a bonus incentive to forget. Apparently it does matter.  I have been trying to eat foods with high magnesium but clearly that isn't working. Oops.

I was pretty embarrassed leaving the message, I felt like I had been caught being a bad patient. I guess I'm back to taking magnesium. It's one of the few pills that I'm slack on. I'm super paranoid about missing a dose of my anti-rejection meds but when it comes to supplements, I tend to be a lot less careful. Apparently I can't get away with anything when my blood levels are being monitored so closely.

Tuesday, 28 July 2015

Stupid Humidity.

Now that I'm back from 'vacation', I've been getting back into my exercise routine. There is a 60km bike ride in September that I've been looking into which means that I need to get my butt in gear.

I went for a short ride yesterday when there was a quick break between the sprinkling and found it much harder than a week ago. The hills were hillier and the descents were less relaxing. This morning's ride went about the same way. My plan was a 20km loop but I ended up only doing a 8km one due to my increased panting and gasping for air. I'm still happy about 8km, it's better than 0, but I'm a bit frustrated that I was finding it so hard to breathe.

I don't think the struggle was due to de-conditioning as much as the oppressive humidity that has hit the area. While my body was tired, the limiting factor was very much my struggle to breathe. It felt like the air was pressing down onto my lungs while I fought to pedal my way through the cloud of clammy, thick, unmoving air. It was not enjoyable.

I now start to mentally spiral a bit whenever I find it hard to breathe, even if it's because I've decided that it's a good idea to bike up a giant hill in miserable weather. My thought process goes from 'wow, it's weird that I'm short of breath after that small hill' to 'I wonder why I'm tired' to a full out panic of "MY LUNGS ARE FAILING!!!'

No, it's not rational. The brain rarely panics in a rational manner. I know that no one breaths well in high humidity. And that most people get short of breath while biking up hills. I also need to keep reminding myself that I'll still get short of breath quicker than regular people as I still only have 62% of my expected lung capacity and that while I am much stronger, my body is still strengthening. I just need to silence that part of me that feels as though I should be invincible by now. After all, it's been a whole 8 months since I had my organs replaced.

I don't think the lungs failing panic will ever really go away. It seems as though my pre-transplant panic about what would happen if I didn't get a transplant and the entire transplant process has been swapped with fear of infections and rejection. It pops up whenever I have a coughing fit (yes, I still get those occasionally), or when I cough once around my family (as they panic and ask me why I'm coughing), or when I find it hard to breathe, even if it's caused by weather or hills or both.

While I'm pretty sure my struggle biking the last few days are mostly weather related, I am happy that I have pft testing on Thursday just to double check everything.

Monday, 27 July 2015

Vaca Pics.

Some vacation pictures! Although to be honest, it felt less like a vacation and more like a 'visit everyone and get our stuff back' trip (which we did, our house is pretty much now fully furnished!). In the few minutes we had to relax, we did manage to visit the beach and wander around a bit. It was nice even though it wasn't quite the 'read books and sit by the lake' type trip I had been envisioning. Perhaps that will be the family PEI trip in August. Maybe...?

First night, Amy and I went for a little horseback ride.
Cody came along to flush out all the birds hiding in the bushes.
It was a beautiful night for a horseback ride.
Off to the beach in PEI before it rains!
The next day was raining so Cody stayed inside for belly rubs.
Off to Yarmouth! We spent a hour on the beach and not in the freezing water.
A quick dip in the lake by the camp one night after our short paddleboat ride.
Beautiful lake sunset which we watched while our campfire got s'more ready.

Sunday, 26 July 2015

8 month post-transplant!

It's my 8 months post-transplant today! Yay for making it this far!

Last week, I got my marching orders (aka appointment times) for Toronto for my 9 month assessment a month from now. All the tests are the same as my 6 month check-up: walk test, blood work, pfts, bronch (boo!), clinic, x-ray, and ct-scan. It's all over two days but I think I'll book our flights for a few days longer on the end just on the off chance that it takes another day. When I was waiting for my 6-min walk test last time, a man fainted while waiting for his clinic appointment after having a bronch and I have fears that will be me.

I also got a call on Thursday from the respiratory clinic in Halifax last week and while I still don't have a follow up appointment with them (the doctors are on vacation), the clinic nurse who organizes everything called to inquire about if anyone from Toronto had been in touch about blood work. They had not so she frantically called them and left many angry messages. One of my routine blood work levels were higher than the last time but after several calls, it turns out they just want to monitor things and will treat if continues to rise.

However, the angry messages were more because my blood thinner levels are still high and Halifax had contacted Toronto to pass on the responsibility while Toronto didn't seem to be doing that. So for the past month, while my levels have been high, no one has told me what medication changes to make so I've just been carrying on. I feel as though I could probably make adjustments myself but I'm not positive I should be the one making that decision.

It's frustrating as when the levels are high, I'm super paranoid about cutting myself in any way. Thankfully, I did hear from the anti-coagulation nurse in Toronto on Friday saying she will keep following me and to have things tested on Monday (which was already planned) but no word about what to do in the interim to lower my levels.

Monday, 20 July 2015

On vacation!

Sorry for my slacking ways, Amy and I took a road trip off to PEI to see David and Cindy for the first time in months. We had a fun but rainy weekend.

And now I'm off on another road trip to see Isaiah's side of the family. We're off for about a week or so to a cabin with no Internet so I'm declaring myself on vacation. Yay!

We made to briefly to the beach before the rain poured down.

Thursday, 16 July 2015

Pottery! WoohoO!

I went to a pottery class today! Well, not so much of a class as a private wheel lesson which I think, honestly, ended up being better. It was at the Tidnish Art Gallery, in Tidnish Bridge, about a 40 min drive from here. The gallery open in the summer and is run by 8 local artists and Thursday is pottery day! They were having a two week handbuiling workshop but it was full by the time I found out about it so they offered that I could do a wheel class with the other potter.

It was really good and challenging. The instructor was not as much of a "let's appreciate the flaws" person as the instructor in Toronto so he only wanted me to keep the near-perfect bowls even though the ones he deemed 'not worth it' looked good to me. He taught me a lot of new tricks which was excellent, it's amazing how much you can learn when someone is watching over you to tell you everything you're doing wrong.

We never really specified a time so I wasn't sure how long I was suppose to stay but after about two and half hours, my back and shoulders had had enough. However, by the time I had everything cleaned up, the pieces which had been drying in the sun were solid enough to trim up. So I spend another hour learning about trimming up the bases. During the trimming process I took out the bottoms of two of the bowls but such is life. I'm really bad about knowing when to stop and think "just a little bit more" before poking through the bottom.

The first day of both the children's and adult's handbuilding workshop happened while I was there and it did look like a lot of fun. They don't have the same molds and equipment as the Gardiner Museum but they seemed to be getting by with what they have. Most of the people had never worked with clay before so everyone was super relaxed and friendly (except for one kid who refused to touch the clay because it felt 'weird' and she didn't want to 'get her hands dirty'. The instructor used me as an example of "look how much fun Allison is having with clay all over her." It was true, I am not a clean clay person. There was clay everywhere by the end, my legs, my clothes, my hair...but yet, for some reason, it did not inspire the kid to get messy)

My pieces are off to their kiln whenever there is a spot. It was all very unstructured and obviously the workshop group get first kiln priority as they need to be ready for next week. The instructor did say that they're making stuff on their own right now so it shouldn't take too long for a second kiln firing to happen. Then I get to glaze things!

Afterward, I drove back to Amherst to pick up some groceries feeling super relaxed and (even though life has not been super stressful lately) de-stressed. There is something about getting my hands dirty and having clay in my hair that makes everything seem okay.

Tuesday, 14 July 2015

Why are we in Springhill??

"Why in the world did you move back to Springhill?"

That is the question' I've been getting from everyone from friends to hospital staff to the people I vaguely know who I run into the drug store. Why would we move back to a town where we really don't know anyone, have no job at the moment, and have no real reason to be here?

My answer is always something along the lines of "well....I don't know, we needed to be in NS and didn't really know where else to go."

That's pretty much the reason. We have to be in NS for their kickass health care and while Halifax was tempting due to friends, the cost of living was higher than we could really afford. So here we are. Honestly, it really isn't much more than we really didn't know where else to go. We could've gone to another small town closer to Halifax but this place is at least close to family in NB and reasonably close to Halifax.

Technically I think we moved back to Springhill because I have some hope about being employed again by Cumberland Health (I'm still talking to HR but it looks hopeful) once I get cleared from the doctor. However, seeing as that doesn't look like that will happen until at least Sept or Dec, there was no real reason to move here until I'm actually once again employed.

It's not as though Springhill is a horrible location. Yes, it's small town and yes, there isn't much cultural events but it's not as though we both grew up in booming metropolis' and need constant entertainment. We've been pretty much on the go every day since moving here so we aren't exactly bored wondering what to do with ourselves. Perhaps eventually we'll make a friend or two in the area to have games nights and somewhat of a social life. Until then, we'll keep going for hikes and making friends with the trees.
Springhill has kickass sunsets.

Monday, 13 July 2015

More garden.

Things are growing! Yay! It's still a bit sad coming from Ont but everything is holding its own. We've had amazing weather the past week which has really helped. Mom and Dad brought me a beautiful tomato and ground cherry plant to add to my collection. I think the tomato looks better than all of the plants they have at home but because it's in a icecream pail instead of a nice container, it's now mine. Thanks folks!

My 'radiant' zucchini is now even more radiant with a flower.
Peas are shooting up.
Mystery pepper plant remains a mystery.
Time for salads!
Time for salads in a few weeks!

Saturday, 11 July 2015


My knee has been feeling much better but I still asked the family doctor to check it out last week. It's mostly been feeling better because I've been babying it. But I haven't tried to run on it again out of concern of hurting it again. The doctor declared that the tendon was slightly inflamed and to continue icing and wrapping it but there isn't much more I can do.

I've been cycling a lot around the hills in the area. On Wed I did a longer ride down what ended up to be a long dirt road. I don't think that will become a regular route for me and Isaiah came and rescued me at the bottom of the hill. Today, however, I managed to get myself all the way home! I did a shorter loop so I still had energy for the hill at the end.

We tried to go for a good hike today but the first one was super overgrown and our second option had no spot to park due to construction so we ended up walking down the trail in Oxford. It was so hot out that even that was enough of a hike for us. Plus we found a lot of wild strawberries so I mostly just ate strawberries along the way.

Because I've been biking, hiking, and kayaking (once), we've decided against joining the gym for the summer. I also set up a exercise space in the little sunroom to do weights and stuff. I'll probably look into the gym again in the fall when it gets too cold for biking.

Some activity pics from the past week:
Little gym area.
Dad and Isaiah trying to beat the rain in Shediac. It was sunny when I went out.
After our long walk on the beach out by Heather's Beach.

Friday, 10 July 2015

Yardsale project

We're pretty much all moved in! We got a lot of our furniture today and will get some chairs over the weekend so we can stop sitting in camping chairs. It's all coming together slowly. We've also been hunting yardsales for a few things we've been missing. Mostly for small desks, lamps, and end tables.

I did find a lamp at one yard sale but decided to try and spruce up the 70s vibe. I painted the shade with some of my parents leftover chalk paint to cover up the orange/brown. It seemed to work fairly well even though I think I watered down the paint too much and it warped the paper a bit. It also got slightly crushed on the way here from Petitcodiac. I'm not sure how much light it would've originally let through but with the paint added on, it's not a very bright or useful lamp so we may invest in a new shade afterall.

Our 70s corner in full force.

Thursday, 9 July 2015


I started a little garden! Well, not so much a garden as a few planters of veggies. I'm too late to go all out but it's nice to have a few things growing. I picked up what I think is a pepper and zucchini at the garden center. They were clearing things out and had very little selection so I went with the two plants that didn't look dead. They've really perked up this past week with all the sun and heat.

I also got some lettuce transplants from my parents over the weekend when they thinned their lettuce rows. I planted some more lettuce peas from seed even though I'm not confident that there is enough time to get much from them. I having nothing to lose though as the seeds are my parents leftovers (thanks for letting me raid your seed stash!) and I had extra Supersoil.

I now have to wear a mask while working with dry soil. Probably also with wet soil but the dry stuff is more dangerous as it blows around a lot more. There are fungi that live in dirt that aren't pleasant for lungs so it's recommended to both water the soil (if it's dry) and wear a mask. While I'm not super concerned about stuff in Supersoil, I still picked up some masks and strapped one on while planting everything. It's hot and annoying but it doesn't hurt to be cautious. The last thing I need is a fungal infection because I wanted a pepper from the mystery plant.

It's mostly likely a pepper but what kind? Fingers crossed on hot pepper.
Peas and lettuce. I remain hopeful.
The transplanted lettuce. A few died but the rest are holding on.
Zucchini in a pretty Ten Thousand Villages planter.

Tuesday, 7 July 2015

Who will monitor my blood levels?

I think I have all my appointments and phone calls set up and made. I saw my family doctor who was quite excited to see me and heard from Halifax today. All the blood work stuff for my anti-rejection levels managed to get worked out and are being monitored by both Halifax and Toronto so that is excellent.

My INR levels (blood thinner) are being a bit problematic as no one seems to know who is responsible for adjusting the medication. I had been getting emails from the INR nurse in Toronto telling me my levels and what adjustments to make which was incredibly convenient for me. I assumed I would be transferred to someone here but my family doctor says it would make more sense for the team in Halifax to adjust meds as they're more specialized in the area. Today, the Halifax team told me that it would be better for Toronto to keep monitoring it for me as they're more specialized. So I hope someone will take responsibility for me.

My INR levels had been fairly stable over the past two months or so but since getting back to the Maritimes, I've been eating way more fresh greens which messes around with absorption rates. My levels were slightly high last week (I did eat a lot of spinach) and no one has told me what to do. I am being careful not to cut myself as it'll take even longer than usual for my blood to clot.

The ideal is to eat the same amount of greens every day so the medication can be adjusted to the level of greens consumed. But I find that a really hard way to eat as tend to buy some lettuce or spinach, eat it, and then buy more two weeks later. I'll probably be more consistent over the summer with all the fresh greens everywhere but will resort back to my sporadic greens consumption in the winter.

Stupid food messing around with my medication absorption rates.

Saturday, 4 July 2015

Setting everything up.

We've moved into Springhill! Well, kind of. We have the apartment with two car loads of stuff which we spent Wed and Thurs unpacking and sorting as much as we could without having any furniture. Hopefully we'll get our big stuff back from various family members this week so we don't have to sit on lawn chairs and sleep on an air mattress. It's a bit like we're camping inside.

On Friday, I managed to get mostly everything set up with the hospitals. It took about all of my phone minutes with all the calling back and forth but I think everything is organized now. The blood work was slightly confusing for all as the requsition said to ship it to Toronto while it really just had to be shipped to Halifax with the results faxed (faxed?!) to Toronto.

Everything else seems fairly straight forward except that no one knows who is now looking at my blood thinner levels which were slightly elevated so no one has told me how to adjust my medication. The levels weren't crazy high so I hope to sort that part out on Monday when people are back from the 'long weekend.'

I also had my lung function test at the Amherst hospital. It took a bit of harassing the booking center to get an appointment this week but they did manage to squeeze me in as I said "last time was low, I need to be checked this week!!" I had naively thought that I could call the respiratory department and they would book me in right away like Toronto but that system doesn't work here. Everything has to go through the third party which is frustrating for all. I guess every two weeks I'll either get a surprise call to go for my appointment now or will have to call to remind them to schedule me.

The good news is that the respirologist there has experience with people who've had transplants and knew who to send the results to in Toronto. Also, my lung function is back up. Woohoo! Fev1 of 1.83. I can only hope that it stops dipping and will stay consistent for a little while. At least they've been consistent at home, even increasing slightly, so maybe all the fresh air is helping.

The third medical thing on Friday was getting some meds from the Halifax dispensary. They ship me the meds which is fantastic. Usually it's through Canada Post but if it's the same day delivery, it goes on the bus. So I got a call almost as soon as we arrived home from running errands from Amherst saying the parcel was waiting for me at the Irving in Amherst (apparently the bus no longer stops in Springhill). I was not ready to rush back to Amherst as we were on the way to the beach and about a half hour later, I got a call from the dispensary saying the shipment had been mixed up and my order had been sent to the hospital while I was now the owner of a case of puffers.

It took awhile to get sorted out with the pharmacist from the hospital had to go switch the parcels back. It was a big kerfuffle that was actually rather amusing on my end. Everyone else was way more frustrated about it than me. I suppose I would have been more annoyed if I had gone to pick up the meds and they turned out to be wrong instead of driving out to a friends cottage to relax by the ocean while everything was sorted out.

Now we're back in Petty to get more of our stuff and so I can go to my appointment with the family doctor on Monday to drop off more paperwork. It never ends!