Cooking: FIsh Tacos!

I haven't been cooking anything new lately. As it's been too hot to turn on the over this past week and with Isaiah gone, I've mostly been BBQing chicken or fish to go with a large salad. However, Friday I went grocery shopping and a fish taco kit was on sale and 50% off so I couldn't just leave it there.

I don't normally buy kits because I find I can make spice mixes that are just as good (or better) but this one was quite delicious so I thought I would share even though this feels like cheating.

I used half mayo and half sour cream with the sauce mix and topped it with lettuce from the garden, tomatoes, and mango. And then I had a big salad on the side. Yum!

Does not include the fish.

Battered and BBQed fish through a foggy lens for some reason.

Mostly just a plate of veggies.

Monthly pft update

I finally had my pfts on Friday (they were originally scheduled for Monday but someone had a "death in the family" so it was rescheduled).

And, I got my highest in about a year! I think August 2015 was my highest post-transplant but yesterday was a fev1 of 1.83, or 63%! Yay! My first attempt was 1.81 and then it took 4 more attempts to repeat it but I finally did (I actually got higher!) so it was accepted by the computer and the therapist!

Clearly all the exercise and the aerosol masks are working for me. My cough is pretty much gone which is also excellent.

The only weird part about it is that I'm getting low numbers at home. I had my microspirometer checked at the lab back in Nov and they said it ran a bit low but getting 1.2something at home and 1.8something at the lab seems to be a bit more than 'running low.' I suspect that part of it may be that I try harder in the lab than at home but it shouldn't be that much of a difference.

Oh well, as long as it's consistent at home and I can deliver at the lab, I'm not going to worry about it.

Never forget your meds.

Monday morning, I went to get my blood work drawn. I set my alarm early, did my (annoying) mask, and, because I was hungry, ate a quick breakfast before heading out. I was halfway up the hill to the hospital before realizing while eating breakfast, I had taken all of my pills. And doing so meant that there was no point in getting blood work done as, to get an accurate level, it has to be drawn before I take my anti-rejection medication in the morning. If I have it drawn after I take my meds (which has happened in the past on other forgetful days), the number is skyhigh and then the doctors panic about the false-high. 

Taking my morning meds with breakfast is so habitual that I never stopped to think that I needed to hold my anti-rejection pill. It wasn't a big deal as I was able to get bloodwork done Tuesday instead but it was yet another reminder that I constantly have to be 'on'. Not only do I have to remember to get the bloodwork done, I need to think about my medication which is always a constant reminder of the transplant. It's something I can never escape from.

Even when I do remember to hold the medication, I can then forget to take it later if I do something outside of my 'normal' routine. One of my bloodwork days, I managed to remember to hold it, got bloodwork done, and then zoomed off to Amherst to get groceries and go for a early morning hike. Only to realize that, in my rushing out the door, I had forgotten my pills on the table so I had to go back home instead of hiking.

Before the transplant, if I forgot any medication, it was never a huge deal. The digestive enzymes were the most important (and still are important) but even then, if I forgot them, it was more about limiting what I ate as I wouldn't be able to digest food. It wasn't a potentially life or death situation.

I realize that sounds super dramatic about one pill on one day but missing immunosuppressant medication can lead to an strengthening of the immune system which can then lead to rejection which leads to lung failure. It's scary to think that one night or morning of forgetfulness can cause rejection.

My phone has a scheduled alarm every morning and evening at 9 to remind me to take my meds but if I'm in the middle of something, I sometimes hit snooze a few times. As a result, it's become habitual to either shut off my alarm without getting up to take my pills or actually get up and take them but then forget. It's become such a routine that I will sometimes panic before drifting off to sleep thinking that I've forgotten. That's where it helps that I have everything pre-sorted in my weekly medication containers so I know if "tuesday evening" meds are gone or not. It's pretty rare that I'll actually forget but it's always something that my mind likes to worry about.

It's hard to always remember to grab my nightly pills if I think I'm going to be out of the house past 9pm. Like in PEI last month. We went off to the beach for a bonfire and it didn't even cross my mind that we were going to be out of the house past 9pm. I had, unusually, left my phone back at the house so I didn't even get the alarm at 9 to remind me. It wasn't until 1030 that I checked the time and then freaked out and rushed back. I know that a few hours delay once in awhile isn't going to cause instant rejection but it's still something that worries me.

Vacation Pics.

During the past week I basically spent every day out kayaking. On the way to Yarmouth, we stopped to hike Cape Split with my aunt which was fun. I don't remember having ever hiked it before.

Cape Split

So many birds!

How I spent last week.

Pretty sunsets.

Can't forget the s'mores!

There is a loon there somewhere. I chased them around the lake, a lot.

Took a break chasing the loons to watch a struggling bee.

Another night, another pretty sunset.

Back!

I'm back from my little vacation! I spent the week kayaking, swimming, and playing washers. It was great but now I feel like I need a few days rest.

 

I'm back to get bloodwork done tomorrow. My one month without bloodwork lasted two weeks. Not too bad. I didn't really think I would be able to go one month without having my levels checked but it was a nice dream while it lasted. My immunosuppressant levels were a bit low last time so the doctor increased my medication dose. As a result, now I have to get my levels checked again to make sure they aren't now too high. It's always a balancing act.

Along with the medication level increase, I've been started on intense aerosol mask to help my lungs and try to get rid of the infection. I'm not really sure why they're treating it so intensely but I'm hoping it gets rid of the cough I've had for several weeks. 

I've been on the mask for one day and it makes me cough and is quite terrible. But I'm sure I'll get use to the smell and taste like I have for all of my other masks and then it won't feel as effective. But it would be nice to get rid of this cough so I'll be good and do my aerosol masks twice a day for the next month.

Whoever said aerosol masks were a gone forever post-transplant were quite delusional. It's nice not to be on them all the time but any time I get any sort of infection, the first thing the team wants to do is put me on some sort of aerosol mask. It makes sense as it's the best way to the meds directly into my lungs but I wish I had been warned more about how many times this would happen post-transplant. I don't mind it too much as it's something I did every day pre-transplant so it's more like going back to old habits. But still habits that I would rather not have and that take a lot of time out of my morning when I would rather be sleeping.