9 month assessment!

I've spent a day (non) relaxing and catching up on some sleep so it's time to report in about the trip to Toronto.

Amy accompanied me to Toronto as Isaiah was busy working. We arrived late Sunday night to realize that we packed sweaters for nothing. We jumped on a streetcar to our cute B&B and crashed out.

Monday morning started off bright and early with bloodwork at 730. I finally managed to get some food around 9 while waiting for my CT-scan. Amy kept running back and forth to the cafeteria to bring food as the day went on. It was exhausting even though I was mostly just sitting around or standing in lines.

Bloodwork: Taken with one poke! It's such a rarity when that happens that it makes me oddly excited. Less pain for me! The lab results looked good, the doctor increased one of my antirejection meds slightly. But I'm happy with the change as it now means that I can take only two 5mg pills instead of one 5mg, four 1mg, and one 0.5mg. Less pills is always better. I may be able to stop some of my supplements and my steroid levels may be decreased. The steroid levels decreasing would be fantastic as it raises my blood sugar levels and they were a bit high. I would rather lower the levels than take more insulin.

Pfts: After bloodwork, I rushed off to pfts. They took forever as I had do the weird one with the inflated bag which takes 5 minutes to fill. It also felt like forever as I was starving (I had to fast for the bloodwork). They were down a bit which freaked me out a bit but in clinic they didn't seem that concerned about it. The number was down from my Amherst tests but was the same from my last Toronto levels. The doctor decided the change was because I was using a different machine which doesn't make much sense to me but whatever. My levels have been creeping back up on my home machine so I didn't think it was worth pushing the issue.

CT Scan and X-ray: I waited in line for CT while Amy rushed off to get food. The scans themselves went fine. It's all just holding your breath while being surrounded by radiation. The results of both were fine, the CT showed some scarring in my lungs which is probably from everything that happened immediately post-transplant but wasn't concerning. 

Walk Test: I was then scheduled for my walk test. I recognized a few people in the physio room who had gotten their transplant since I left. Yay for them! My walk test was up 12m from 3 months ago. I was hoping that it would be higher but seeing as my right leg starting cramping about the 4 minute mark, I'm not complaining. I guess that's what happens when I spend the week before a walk test doing a ton of physical activities. My blood pressure spike afterward to scary levels but since it soon dropped back to normal, the physiotherapist was only mildly concerned.

Clinic: Despite the two hour wait, clinic was fine. Everything was reviewed and the doctor decided not to make a decision about my persistent weird cough until after the results came back from the bronchoscopy. He said that he thinks I need a new antibiotic but wanted to hold off until he knew which one would work best for whatever was growing in my lungs.

Bronch: Tuesday was my bronchoscopy. I arrived in plenty of time and flew through all the prep work. And after gargling the freezing crap, doing the lung-freezing aerosol mask, it all screeched to a halt. Previous times, the doctor was waiting anxiously at the door for the mask to finish but something must've been running late and by the time they came to get me a half hour later, it felt as though all the freezing had worn off.

Thankfully, once I was wheeled off to the little procedure room, I got loads of more freezing spray. I asked to be as well sedated as the previous bronch which had gone well and while the nurse said "that's a lot!," the doctor agreed. Except this time, I woke up before they were done and started to panic. The 'choking and dying' feeling does that to me every time. I heard the nurse ask if she should give me more sedation but the doctor said that there was no point as they were almost done.

I kept freaking out even though they kept trying to reassure me but saying 'you're ok' isn't exactly comforting. They must've given me something or I passed out in a panic as I woke up next in the recovery room. After the 'make sure you don't have oxygen outside your lungs' x-ray, I was sent on my merry way with Amy being paranoid that I was about to pass out on her at any second. They didn't tell me anything except the typical 'don't eat for awhile and watch for a fever' lecture. I won't get any of the results until next week so fingers crossed that it all comes out negative.

Toronto: Toronto was humid and sticky but still as great as ever. We didn't do anything specific but we made it to the Kesington Market to buy some cheese, wandered around the fashion district, and saw lots of tacky stuff in Chinatown. We met up with my cousin and pottery friend for some yummy meals. I miss the city a bit but I'm very glad that I wasn't there for the summer as the heat was quite oppressive. I am much happier without a film of sweat on me at all times.

That's about it for the very long summation of the two testing days in Toronto. I'll head back in three months for my yearly assessment!

Chinatown!

No more physio for me!

I'm being discharged from physio! The physiotherapist decided that my progress was good enough that I'm ready to be on my own. Friday is going to be my last day. When I exercise on a treadmill it will no longer be considered 'physiotherapy' and will simply be 'exercising.'

It's kind of a terrifying thought. Not that I don't think I'm ready, it's just a lot easier to maintain a exercise program when I have to be accountable to a physiotherapist. One of the main reasons I went so regularly was that if I did cancel, I had to call in and be grilled by the physiotherapist as to why I wasn't showing up that day.  "I'm tired" was never a good reason for them.


As part of the discharge spiel, I was told that each week I should aim for at least 150 minutes of aerobic exercise, two days of weight training, and two days of good full-body stretching. Apparently I'm now going to become a gym rat. Have I mentioned before how much I hate the gym? Although I have been going pretty regularly for the past year and half so maybe I've somehow secretly turned into a gym lover without realizing.

The fun exercises like cycling or swimming won't be difficult to do but seeing as I can't swim yet due to my wound and the weather isn't consistent enough for daily cycling, I'm still going to have to rely on treadmills for awhile.

I just need to find something that's as motivating as avoiding an awkward telephone call. Being accountable to Isaiah doesn't work either as I have no problem saying no when he nags me to exercise. I'll have to find some way to reward myself if I make it out for 150 minutes of exercise a week. Exercise = starbucks treat!

Or perhaps I should try negative reinforcement which I've read actually works better. The theory is that you set up a third party member who donates some of your money to a charity you hate if the goal isn't reached. 150 minutes of exercise a week or my money goes to a charity to save the precious pigeons.

Perhaps I need to keep brainstorming ideas.

Goodbye treadmill room!

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.

New infection.

I got a phone call this morning from the hospital. When I answered the phone and heard "Hello Allison, this is Dr. I-Forget-Her-Name, from the Toronto General Hospital, how are you?," I let out an audible "uh nooo" as a response. No doctor calls on a Saturday to chat about the weather. She laughed at my reaction and then proceeded to tell me that the results of the wound swab have returned and it is indeed infected.

Nooooooooo. 

Thankfully, she felt confident that it could be treated with an oral antibiotic so I didn't have to rush into emerg for an IV. However, Isaiah did have to walk up to the hospital to pick up my new prescription before their pharmacy closed. Just like he did yesterday for another prescription. I tried to be helpful and offered to sit in the car if he wanted to drive but he opted to walk instead. We both can't wait until I get the approval to drive again.

So, two weeks of a new antibiotic and hopefully that will get rid of this nonsense. I do imagine that this means they'll want the dressing changed daily so we're going to have to figure out how to deal with the wound without gagging.

2nd Post-Transplant Clinic

I had my second clinic today and just like last week, I arrived home only to collapse on the couch for the evening. There wasn't as much of a information overload this week but it was most definitely a longer day.

To start, I had physio bright and early which I always find a bit of a struggle as I still feel half asleep. I am progressing slowly on the treadmill, increasing my speed in 10 minute increments. I have my 3 month walk test next week which is slightly terrifying. Maybe I'll make it down the hall three times before my legs give out. The physiotherapist also "suggested" that I start exercising at the gym here in the building on a few of my 'off' days. She stared me down until I agreed. Isaiah was listening in so I'm not going to be able to slack off without hearing about it all the time.

Following physio, I had my lung function tests which were up slightly! Up to Fev1 of 1.07 or 33%. Considering this morning the highest I could get with the spirometer was .86. I'm slowly starting to accept that my numbers are low and they might build up over time or they might not. The important thing is that the lungs are working and I'm not short of breath.

The big news from clinic is that I can stop my aerosol mask and one of the medications. Yay!!!! I didn't expect anything to be discontinued until after I met with the infectious disease doctor next week. It was a nice surprise. I can wake up in the morning and simply get out of bed for the first time in forever. It's going to be strange. I'm sure I'll waste the extra time sleeping and continuously hitting the snooze button instead of anything useful like shower. I tried to talk them into discontinuing some of my other medication since they were on a roll but the doctor wasn't a fan of that idea.

The other news is that there were only 2 1/2 viable samples from my broncoscopy (I'm not sure what a 'half' of a tissue sample means). This means that because of the tiny sample size, the doctor could not give a definite result. After the bronc, they told me they were only able to get 5/10 samples so I'm not super surprised. I fear that this means I'm going to be required to do another bronc before my 6 month assessment so they can get a definite result. Nothing was said at this clinic but there was a lot of "oh well, 3 months would be a long time to wait for the next one." The good news is that the 2 1/2 samples that were viable, were all negative for infection, rejection, and everything else tested. It's just not confirmed 100%. 

I also had my wound assessed by the specialized wound care nurse who had a new idea of how it should be dressed. It has been starting to smell a bit in-between dressing changes so it was swabbed for infection and said it did look slightly inflamed. I was given the okay to change the dressing on the 'in-between days' if it gets smelly or has a lot of discharge. That is a great idea, the problem is that it's super gross and it both Isaiah and I are not big fans of looking at it, let alone poking at it with gauze and saline. I am usually fine with these things but I think because it's on my own body and in such a awkward location, it's somehow different.

That is pretty much everything that happened today. I hope these clinic visits get less intense each time. Next time is going to be my official three month check-up appointment. I also have a bunch of other random tests booked for next week and the following week. The tests never end!