Tuesday, 11 March 2014

Waiting game: 5 month update

It has been 5 months since I was listed! I can't really believe it has been that long. Despite February dragging out a bit, it doesn't seem like it has been 5 months. It can only be a positive thing that the time doesn't feel like it is dragging on.

Here is my monthly update on life pre-transplant in Toronto (sorry for any repetition to those who read the blog regularly):

- Physio remains as boring as ever. I have progressed to 8 and 9 pound weights! My goal is to get up to 10lb leg weights but my legs seem to not be building muscle as fast as I would like them too. It probably has something to do with the fact that I only do ten lifts of each muscle three times a week. I seem to have plateaued on the treadmill and bike as if I push myself any further, my oxygen levels drop below 88% which is a no-no. So I seem to be stuck where I am for now which is okay. Some days the cardio part of the workout seems super easy and some days it is a struggle. I haven't been able to determine the variable that decides if it is going to be a easy or hard exercise day.

- I still haven't made any transplant BFFs at physio or elsewhere but I do have a small talk relationship with a few people which is nice. We always just talk about the weather or the traffic which is not very exciting but it is nice to actually talk to people. Last week, someone actually told me about someone else having a transplant last week and who is doing well so I feel somewhat in the loop! I have no idea how people get their information but everyone always seems to know the status of everyone who have recently had transplants. My Monday physio time has switched this month from 10:30am to 1:00pm so I will now have a new group of people with whom I can talk about with weather.

- The weather has been a huge struggle for me lately but that seems to be changing which is a relief. It feels great to be able to walk outside and not immediately start coughing or tense up. I'll hopefully now be able to relieve some of the tension from my shoulders and back. I know people just want it to be summer now but I will be happy if it stays around the 5 degree mark for the next month. I'm in no rush for it to be full on summer which I'm sure will present a whole new level of weather-related struggles with the crazy Toronto heat and humidity. I am so happy that the winter is pretty much over. I'm sure you are too as it means I will stop whining about the cold. 

- I had a bit of a head-cold last month but it didn't seem to move into my lungs and my lung function had returned to its new baseline at my last doctor appointment which is all good news. I think the lesson from it was to maybe not cram so much into family visits. Especially if it is February and super cold outside.

- During February, there were a few days where I really wanted the transplant to happen that day so I wouldn't have to deal with the cold and physio (not that the transplant is going to eliminate physio). It has been the first time where I've had that feeling and I don't know where it came from. It's not like I've been lonely as there has been no shortage of family around. Part of it was that I was feeling like the novelty of living in Toronto had worn off and I was ready for it to be over. I haven't felt that way in a week or so, so it may be related to the change in weather. I'm now starting to think of all the new fun things I can do in Toronto once it warms up (booked tickets for a Jays vs Red Sox game last night!) and all the fresh market food that will be available. I think the combination of not wanting to go outside because of the cold and being sick was bringing me down. Hopefully that is now behind me.

- I have started to wear my oxygen while sleeping some nights. I started doing it while I had my head cold to help me sleep and I find I cough less in the night when I'm wearing it. Although that could also be because I am feeling better. I'm not sure but I continue to use it at night because my oxygen levels probably do drop low while I'm sleeping (they tested my night-time oxygen levels a year ago when I was hospitalized and they were a bit low but not low enough to require oxygen. However, I feel like it has probably changed over the past year). The only problem with wearing it at night is that sometimes I wake up having managed to wrap myself around in the cord. So now I have a fear that I'm going to strangle myself in my sleep. Although it would be a fairly ironic way to die, I would rather not any time soon.

- I realize I have fully developed a need to have my phone beside me at all times. This was especially evident last week when I somehow managed to forget it when we went to the art gallery. I didn't completely freak out but I felt like I was missing something the entire evening. I had my pager on me so I knew rationally that the hospital could still contact me if a set of lungs arrived. I still spent the entire evening subconsciously feeling my jacket pocket for my phone. Pre-listing, I always made a point to not take my phone to work or when I was going out with people so I wouldn't feel dependent on it. I guess I could take my pager everywhere but for some reason, I don't have full confidence in its abilities. Post-transplant I will have to try and break myself of my phone addiction.

That is all I can think of for now! We have a bit of a break now company-wise until the end of April (unless someone else decides to visit) but I don't think I will have much time to sit around and get bored. The wait continues!

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