I have been on the transplant list for 1 month today. I didn't think I was going to be counting the days but seeing as it is such a big part of my life, it is hard not to notice how much time has passed.
Here is a summation what is has been like on the transplant list in the last month:
- I have started wearing my oxygen when I go places. My oxygen saturation levels are still ok when I'm sitting around the house so I'm not on it 24/7 but if I am doing anything active (like walking around) than I should be wearing it. I've actually had a few people give me or offer to give me their seat on the bus which was excellent. What was not excellent was when some guy started smoking beside me while I was waiting for the bus as I have a (I feel rational) fear of oxygen + fire.
- While I realistically don't expect the call to happen for at least another few months, I am pretty obsessive about having my phone within reach at all times because you just never know. I realize this is partly irrational as the person making the call will also call Isaiah's phone and the pager but despite rationally knowing that, I still can't shake my panic every time I misplace my phone (which happens more than one would think).
- The first few nights I was listed, I woke up panicked every few hours that I had missed the call and had to check my phone before I could get back to sleep. I rarely do that anymore but I have had a few dreams about missing the call so obviously my subconscious is still worried.
- I still have a small adrenaline rush every time I get a call from a blocked or unknown number. I'm not sure if that will ever stop. The worse part is when they don't introduce themselves right away and have no idea that I am mildly freaking out on my end. The whole 'Hello?' 'Hello, is this Allison?', 'Yes', 'Hi Allison, how are you doing today?', 'Fine!...WHAT DO YOU WANT? ARE GIVING ME NEW LUNGS!?' conversation is frustrating every single time. They are always calling about something stupid too. Like a new credit card or bank loan they want to give me.
- Physiotherapy is going well, I am still going 3x/week. My intensity has been increased for cardio and I have been given bigger weights (woohoo 5 lb!). I appreciate that they are not letting me wimp out. The frustrating part about exercising is that my oxygen levels tend to drop before my body gets tired. I get super excited when I sweat (which sounds incredibly lame) because it means that my body has gotten tired before my lungs which is excellent as my lungs are pretty horrible.
- I met the transplant care doctor last week at my check-up appointment for the first time. I have appointments with the transplant team roughly every 3 months and with the CF team roughly every 6 weeks. Each appointment has me do a lung function test, weight-in, and blood pressure check. While I appreciate that they are super thorough, the appointments have been super repetitive and boring. Although that is probably a good thing as exciting appointments tend not to be good news.
- Every time I hear about someone who died in hospital or who was taken off life support, I now wonder who, if anyone, has gotten their organs. Then I feel like a horrible person for that being my first thought but I can't seem to help myself.
- While it sucks waiting for an unknown amount of time for a transplant, I am still doing and planning lots for the upcoming months (while knowing it could all be cancelled if I get the call). I'm trying to make the best of my situation by going to see as much as possible before I either a) get too sick to go or b) have the surgery and am stuck in the hospital. We are off to the zoo this weekend!
So pretty much, I'm doing fine and Toronto is treating me well while keeping me entertained (thank you Rob Ford). The weather has been fantastic so I am choosing to remain in denial that it will eventually get cold. All in all, for being stuck in Toronto, the last month has been pretty good.