Christmas cards

I spent last weekend making Christmas cards. Yes, it's way too early and I would usually wait until at least Nov but seeing as I had a stack of old cards and knowing that they would be the first to go when our car fills up for the move back to the Maritimes, I decided it was as good of a time as any. I'm now all ready for next year!

Cards!

Queen of Puddings: Attempt #1 and 2

I tried to make a "Queen of Puddings" after I saw it being made on the Great British Bake Off. It looked like one of the few desserts I could actually recreate as it's basically a layer of custard, jam, and meringue. It also helped that we had a ton of leftover jam from all our visitors that we weren't likely to use up anytime soon.

However, my confidence that it would be super easy to make turned out not to be true as apparently I can not make proper custard even though I was working from custard powder. Version number one was also way too sweet as I went overboard with the jam layer.

Version One:

It's suppose to be fail proof!

Added the milk and it's okay so far.

And then I overbaked it. There are suppose to be breadcrumbs to mix in with the bottom layer but we were out of bread that day so I just eliminated it. 

And then I added way too much jam. When they say 2-3 Tbsp, they mean it. I think warming the jam before trying to spread it on would've helped.

Added meringue and baked again, It looks so delicious!

And then I cut a piece off and realize I had made jam soup. This is why you only use the 2 Tbsp of jam.

Once it had cooled it was less of a mess but still way too sweet.

Attempt #2.  Pretty much the same thing except I decided that I should substitute the breadcrumbs with ground almonds. It was a good theory but didn't work at all. It did cut the sugar but added a weird texture. I also overbaked the custard again. Stupid custard. Now I'm thinking it might actually be easier to make it from scratch.

This time I made up a rhubarb strawberry sauce and used the proper amount. That part turned out well.

It held together so well and looks so pretty! If only the bottom layer wasn't so weird tasting.

I may try again for Easter dinner and force the family to choke down version #3. I'm not sure why I want to keep making it except for the fact that it seems way to simple for me to be messing up the custard. It's bothering me.

Recipe: 
(Although you should probably use a one from a blog that doesn't also have examples of two failed attempts.)

Bottom layer: Custard and a cup of bread crumbs. Don't substitute the breadcrumbs with ground almonds. Bake at a low heat until slightly wobbly. Best not to overbake. Cool slightly before adding jam.

Middle layer: 2-3 Tbsp of jam. On the show they used strawberry but realistically, just use some from that old bottle of jam in the back of the fridge. Or is that just me...

Top layer: 3 Egg whites. Whip until soft and then add about 3 Tbsp of sugar to help hold the whites together. Whip again until you can turn the bowl upside down over your friend without the whites falling on their head. Or there are firm peaks, whichever description you prefer.

Bake at 350ish until the egg whites are meringue-y, cool for a bit before eating otherwise you may end up with jam soup.  Good luck!

Dishclothes.

My stress-knitting dishcloths, the good news is that I managed to use up all the tiny balls of yarn from the bottom of the yarn box. Now I no longer have an excuse to not wash the dishes.

Home!

Everything was finally sorted today and I've been able to return home, hurray! The delay from yesterday was that the medication was not actually in at the pharmacy so I had to wait for the shippment to arrive. And it arrived this morning!

After a lecture from the pharmacists and having to convince him that we knew what we were doing with the medication, we gave him all of our money and fled as quickly as possible.

The plan is to have homecare mix the medication daily, set up for my afternoon dosage, and I'll infuse the other two daily doses myself. They don't want me mixing the medication for some reason but are okay with my administering it to myself. It seems silly to me that they don't trust me to put a vial of water into a vial of powder but I was not going to argue if it meant I could leave.

It's wonderful to be home, I had a much needed three hour nap in the afternoon once the homecare nurse left. I may not be able to get to sleep tonight but it was worth it. 

Neurology

For those wondering about my neurology appointment on Friday, there was no significant news. I wasn't quite sure what a neuro appointment entailed but turns out it was all a bunch of reflex tests along with some of the 'don't let me move your limb' ones that I failed miserably. It was all fairly straightforward but embarrassing at how little resistance my muscles have.

He showed me my brain MRI that was taken immediately after the seizures and explained all the findings to me even though I didn't really know what he was talking about. Apparently it's 'common' for people post-transplant to have blah-blah-seizure disorder (I'm sure that's what it was called...) which means he isn't ready to say that they were caused by the high amounts of meds. Even though I, and all the other doctors, are pretty sure that is the cause.

I will have a follow up MRI to see what's changed and in the meantime I'm allowed, and have started to, wean myself off the seizure meds. It's a slightly scarey process because if the meds are keeping the seizures away, now I'm prone to have another seizure. But obviously there is no point in being on the meds if it really was a one time thing. The only way to know is to decrease the dosage slowly and see what happens. Isn't experimentation fun.

The most frustrating part is that he would not give me the okay to drive for at least another 3 months or after the follow up appointment. Gah! I miss driving a lot and Isaiah is not a huge fan of being the chauffeur.

Hospital stay continues

I'm still here at the hospital. The latest plan is now for me to get the medication from pharmacy and the hospital will sneak me out with a bunch of supplies and I'll give myself two of the three doses with homecare being responsible for the third. I'm basically agreeing to any plan that gets me out of here at this point.

The one hurdle with that plan is that the pharmacy doesn't seem to be a fan of handing over IV medication to patients. It has to be mixed which I think is also part of the problem. I'm quite confident though that I can take medication out of a vial and inject it into a saline bag. Not really sure why they think that is harder than everything else I've been doing.

In the meantime, I've been trying to not get too angry about the situation by watching TV and stress knitting dishclothes. I'm also sustaining myself on onion rings and giant drinks sugary drinks from Starbucks.

Back in the hospital.

I've had an unexpected turn of events. It all started so well on Friday with a beautiful day (it's above freezing daily and there is no snow here, muhahaha), we went to my afternoon neurology appointment with the plan of strolling around and grabbing a delicious lunch at the Kesington market afterward. About halfway through the appointment, my transplant coordinator called with news that the bronchoscopy from Wed showed signs of infection so to get my ass to the Toronto General asap.

After trying to quickly wrap up the neuro appointment, we cabbed it over where I was hooked up in the day unit for my first dose of IV antibiotics. It didn't take too long and I was told that the rest of the 14 day treatment could be done through the homecare nurses and that the supplies would be delivered to me that evening. While the idea of carrying around a little IV pump and having daily homecare was annoying, it was better than the idea of being hospitalized.

When no supplies showed up at the apartment that evening, I spent the rest of the night calling all numbers I had for the nursing people, the on call doctors, and the supply department trying to figure out what was going on. Turns out what was going on is that the paperwork never went through and even if it had, the supply people would not deliver it as I'm not an Ontario resident. This is the wound care issue all over again.

Thankfully the doctor said I would be fine delaying treatment by a evening (the medication is suppose to be every 8 hours) and that everything would be sorted out today.

Everything was not sorted out today and the plan has changed from "having it done through homecare" to "being hospitalized this weekend". All because some people can't get paperwork done. Arghhh!!!! I had even thought this might be a problem on Friday when I left the day unit as I kept saying that homecare doesn't provide supplies. I was told many times that it was all sorted out. Clearly it wasn't as I sit here in the hospital angrily writing this.

They claim it's just a weekend stay but no one believes that. Even the nurses laughed when I said something like "just for a few days right??....right....?" Now the doctor wants me to get a PICC line while I'm here and I'm sure tonight she'll think of a million other tests that would be easier to run while I'm an inpatient. I predict leaving Wed-Thurs as it will also depend on the supplying issue.

12 hours in and I already feel like screaming at everyone in frustration and am ready to break out. Perhaps I can distract them while Isaiah raids the medication room and sneaks out bags of IV tubing. *sigh* Hospital stays are so much harder when I don't feel sick.

One of my two IVs. They are seriously running out of veins.

I survived the bronc!

I survived bronc #4. Urgh! It was slightly better than #3 but not by much. I was given more sedatives as promised but it didn't seem to make enough of a difference for me to pass out during the procedure. I found it to be about the same horrible experience while the respirologist said it was harder this time. She didn't visit me afterward so I'm not sure if they managed to get enough samples this time. I really hope so. 

I bailed on physio today despite my very encouraging day on Monday. This morning I was still feeling slightly light-headed and hungry from fasting so I thought it wouldn't be the best idea. While I was allowed to eat yesterday after the bronc, I only managed a bit of soup because of my extremely sore throat. It feels much worse than last time. My theory is that it wasn't fully healed from the pH study last week and yesterday irritated the already damaged tissue. Providing that they managed to get enough samples this time, I should have a break from scope-tests until my 6 month assessment. A whole 2 months away!

Ahhhhh

I have my bronc today *deep breath* ahhhhhhhhhhh. I've been trying to avoid full blown panic attacks every time it's mentioned and have been somewhat successful.

The only thing that is keeping me relatively calm is that on Monday at clinic, the doctor said she could give me more sedative this time around as my lung function has increased so my lungs can handle it.

I guess I better get ready for - what I hope will be - my afternoon med-induced nap instead of continuing to hide in bed hoping if I hide under the blankets than I can avoid all responsibility. Wish me luck!

Happy St. Patrick's Day!

Happy St. Patrick's Day! 

We had a visitor from the East Coast here for the weekend, hurray to seeing friends! We had a fairly low key weekend catching up although we did manage to head out to a ballet and check out the St. Patrick's Day parade. It was a fantastic weekend.

Attending the parade gave me a bit of a confidence booster as I was proud of myself for how long I managed to stand during the parade before my shins started screaming. Although I do find it strange that it's my shins that are now the first to hurt after walking or standing for too long. It was also the first time that I took the streetcar/subway post-transplant which was sadly super exciting. These random 'first times' are way more exciting than I would have ever expected they would be.

The confidence booster continued during physio on Monday. I felt strong for the first time in a long time. I was able to increase both my arm and leg weights, the treadmill speed, and, during the much-hated sit-to-stands exercises, my thighs didn't give up on me at the end. Yay strength returning! It feels like I may have turned a corner and was very motivational for when I spent the rest of the day waiting for the doctor.

Some pics from the fun weekend!

Twas brillig, and the slithy toves...

So high up! No, I did not climb all the stairs.

Parade!!

One of many random trucks.

Old car!

 

Knitted toque

A happy post: in all the trauma on Wed, I finished the hat for Isaiah! One upside to not being able to comfortably move my head was that it was pretty much perfect for knitting. It's a bit of a funny shape and I'm not sure why the brim is so big compared to the rest of the toque. I guess that's what happens when using random Internet patterns.

It shrank down quite quickly so my fear of it being ridiculously large was incorrect. It is just slightly too big so now he is trying to shrink it with water and the dryer. I have relinquished all responsibility for it from this point forward.

First hat done!

With the rim rolled up as directed...I can't imagine it will ever actually be worn like this.

Isaiah's attempt to shrink/mold it to something about the size of his head.

24 hr pH study

Urg, yesterday was another horrible day at the hospital. Thankfully today I was able to leave the hospital not exhausted and on the brink of tears. The cause of my exhaustion yesterday was the '24 hr pH study' which was the official final procedure of my three month testing.

The 24 hr pH study is designed to look a persons acid reflux and heartburn post-transplant. I was told this study became necessary when post-transplant people with no prior history with problems were randomly found during broncs to be aspirating during the nights. When they found enough food in people's lungs, they decided to test everyone as a proactive measure against aspiration pneumonia.

Understanding the reason for the testing did not make it any easier. How it goes is that the technician shoves a tube up the nose and threads it into the stomach to study. It was horrible. At least with the NG tubes I had inserted in the hospital, I was unconscious or semi-unconscious so it was clearly a much better experience. This may have actually been worse than the bronc by ranking of 'traumatic medical procedures.' There was no sedative involved as it's a "super easy procedure!",  there was a small amount of freezing squirted up the nostril but I'm not sure it helped.

It seemed like hours for her to get the tube into my stomach (Isaiah claims it was 10 min at most), during which time I managed to throw up the small amount of water in my stomach, dry heave, and continuously gag while unsuccessfully holding back sobs and tears.

Once it was finally in, I had to drink sips of 'special apple juice' (that's what she called it) while she measured..something. I assume a baseline pH level but I really aren't sure and didn't care at that point. I was suppose to just swallow once but my body was reflexively trying to get rid of the tube and I could not stop swallowing. I'm not positive she got any good results. 

For the second part of the study, the first tube was pulled out and a second smaller one was inserted. Thankfully it went down much better,  I think mostly because my nose and throat were too sore to care any longer. The tube was attached to a small machine that I carried around for the rest of yesterday and this morning.

I was suppose to eat and drink normally to get an accurate recording but my appetite was pretty much shot for the day once I was done there. It didn't help that it hurt to swallow or talk or when I moved my head to quickly in any direction. It was a very unpleasant night, made worse by the fact that I got a call informing me of a scheduled bronc next week. Argh! Something to think about all weekend.

I was quite happy today to be able to return the machine and have the tube yanked out. I was given the promise that the study will never have to be repeated so I'm holding them to that promise if they ever want to do that to me again.

Monday Clinic

Yesterday was another long hospital day. I promise I'll try to stop complaining about these crazy days at the hospital. Although to be honest, it will probably stop about the same time they stop happening. It was good that I had the weekend to relax otherwise I would have been even more exhausted today.

It started with blood work, physio, and x-ray in the morning which was all fairly regular. I wish being poked twice for blood wasn't considered 'regular' for me. My poor little damaged veins.  In the afternoon, I met with the pharmacists who reviewed my medication list, listened to all my complaints about the side-effects, and told me there was nothing she could do to decrease the symptoms.

Afterwards I had my pfts which took forever. As it was the official testing for my three month assessment, I had to do seemingly every test. For those who are curious what 'every test' means, there was the one with slow inhalation and exhalation; one with slow inhalation and quick exhalation; one with slow inhalation, slow exhalation, slow inhalation, hold for 8 seconds and quick exhalation; and finally the two separate ones in the box with the panting and blocked oxygen.

Each test is repeated a minimum of 3 times, more if I screw up or don't do well somewhere. I definitely feel as though I've been through a workout by the end. I also had my blood gas levels taken there. Blood gas levels involves a painful needle into a artery in the wrist to check if you have the proper amount of oxygen in your blood. No surprise, the technician missed the first time but was still determined that particular spot was the best. After rubbing the bleeding area with alchol, went back in for a second try. Thankfully she was successful but afterward, the blood bubbled in the location instead of quickly clotting (thanks to my blood thinners) so she had to put basically her full body weight on my pained wrist to both stop the bleeding and disperse the pool of blood. I was a pained tired mess by the time I left.

The long pft visit made me super late for clinic. Since I was running late, most people had gone home so it was fairly quick as I think the doctor wanted out of there as much as me. There were no results from my gastric emptying test but my CT scan looked better than the one from December (yay!). Apart from increasing a bunch of my meds (yes the ones I had been excited were decreased last week), there wasn't anything else to review.

I came home in time for a quick shower before the home care nurse arrived. Since the vac machine has been removed, the only time I can now shower is right before the wound dressing is changed as the dressing gets soaked. The other days I get to 'enjoy' a shallow bath with hair washing done in the sink by hairdresser Isaiah. We've finally gotten to a point where there is no longer any yelling during the process and I no longer get poked in the eye. Progress!

I spent today recovering and doing fairly little. I did managed to make some progress on the toque and realized it's somehow turned into a monster hat. I'm not quite sure where I went wrong and hope it's only an illusion or that the yarn will shrink or maybe Isaiah will manage to grow a bigger head to make it fit.

Post-transplant 6 Min Walk Test

I finally did my first post-transplant walk test on Friday. I very grumpily managed to walk the hallway for the 6 minutes.

I think I was grumpy mostly because it was a early morning for the gastric emptying study. It's part of the 3-month testing and looks at how fast the stomach digests food. Apparently (I learned yesterday), some people have problems post-transplant with digestion as the nerves may have been impaired during surgery. This checks to make sure everything is working properly before they send people home.

Fasting for 12-hours is required and they provide a breakfast of egg whites and toast laced with radioactive material (barium I assume), and a tiny cup of water. I really struggled to eat it all in the 10 minutes they want. I am not a huge egg person (unless served with bacon and smothered in Hollandaise sauce) at the best of times so add a weird crunch, early morning, and no flavour and I found it very hard to get down. I think the constant reminder that if I didn't eat it or vomited, I would have to do it all again next week was a good motivator.

After consuming the gross food, a one minute stomach x-ray is taken and then again on the hour until I had less than 10% of the food left in my stomach (it took three hours). It was all quite boring and I have no idea what the results were. I may find out on Monday in clinic, I assume if they weren't panicking or keeping me there for hours than everything went as it should.

Afterwards, I had my wound dressing changed at the outpatient clinic and then Isaiah suggested I check with physio about doing my walk test before lunch to 'get it over with.' He was right as they had the time but it didn't make me feel any less as though somehow the only reason I was doing the walk test was because of him. I may have been acting slightly irrational from grumpiness.

For the actual test, I made it 437m which is less than my last pre-transplant walk of 548m. It's super frustrating. Even though I know rationally that my body is not at physically strong as pre, I still don't like seeing the evidence in front of me. The positive part is that my oxygen levels stayed steady and my heart rate didn't go shooting up. The not so positive part is that at about the three minute mark, my legs were on fire and I stopped really feeling them at five minutes. Clearly I am unable to pace myself. I had my actual scheduled physio after lunch which punished my legs even more. I'm amazed they weren't a giant cramp today. Although to be fair, I have done very little today so maybe that balanced it out.

I would like to say I was less grumpy after the 6-Min test and physio but it took until I was able to nap for a few hours after we got home before I felt better. Helpful hint: I do not recommend scheduling a gastric emptying test, wound dressing change, 6-minute walk test, physio, and CT scan all in the same day.

Niagara Falls!

Road trip to Niagara Falls! We went yesterday with my cousin and was able to check off one thing on my 'Toronto-area activities to-do post-transplant' list. I was always too nervous to go pre-transplant as while it's technically within a two hour drive from Toronto, the traffic is always busy that way and I was afraid of getting the call while stuck in traffic out there. It was cold but lovely with all the ice and snow. It was also great to get out of the city for the day.

Winter Falls!

Snow build up.

The American Falls look more impressive in the winter.

Super frozen.

A day not at the hospital, yay!

We drove to the whirlpool as none of us could remember having visited it before. It was not as whirlpool-y as expected.

Stupid Antibiotic

The new antibiotics have kicked in. Either that, or I'm starting to get sick. Yesterday, was much more hectic than I had expected. That seems to be a common theme to my life these days, either hectic days or ones where I have absolutely nothing planned. Rarely is there anything in between.

The homecare nurse surpringsly arrived at 8 am as we were getting ready to leave for the hospital which threw off the morning schedule. I find it really hard to say no when they call to say they are basically at the door and could they please come now instead of later. It hasn't happened too often but it is still inconvenient some days. Thankfully, the nurse flew through the dressing change in time for us to join the morning traffic.

The delay meant I was super late for my pft appointment so I wasn't able to do the entire lung function set as the glass box was 'contaminated' by someone else with CF (yay!!!). They have a policy there of scheduling people with CF a half hour apart sounds great until but it's not practical when there are people like me who end up being 45 minutes late for their appointment.

I assume the policy is so people with CF a) don't run into each other in the waiting room and b) their germs have time to dissipate a bit before the new person arrives. I mean, we all then go on to use the same elevator and eat at the same cafeteria with everyone else and their random germs. The infectious control people can't win when it comes to applying a policy to the real world. I'm more concerned about catching C-diff at the hospital than anything from another person with CF. I can kind of guess who else has CF by their body size and age but anyone could have C-diff. Urggh.

The main reason I feel as though the antibiotics have kicked in or that I'm getting a cold is because during physio, while doing my legs weights, I suddenly felt a bit lightheaded and vomity. I sat down and Isaiah, thankfully, grabbed a garbage can just in time for my stomach to decide it no longer wanted to process food. Any of it. It was quite unfortunate. I'm apologize to everyone else at physio who had to witness that while exercising.

I've been feeling a bit nauseous over the past few days but not to the point of throwing up until yesterday. The physiotherapist quickly tried to figure out what was wrong, quizzed me on everything about my life before telling me to go home immediately. She did not want me there spreading my vomit germs around. I guess that's one way of getting out of the exercise bike. Clearly, walking on the treadmill and the exertion was the cause. Does this mean no more exertion for me? I seriously doubt it, I'm suppose to do a 6-min walk test this week. Isaiah will have to walk behind me with a bucket.


I really hope that the nausea is linked to the new medication and not that I'm getting sick. I threw up again last night while falling asleep but so far today have been okay. It probably helps that I'm throwing back anti-nauseantes, containing myself to a diet of apple juice and starches, and binge watching The Great British Bake Off. One more thing to talk to the doctor about next appointment. Thanks body, for making sure I never run out of problems to discuss with them.