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!
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