Tuesday, 10 December 2013

Waiting Game: 2 months.

I've been on the list for two months! Hurray!?

Let's see what happened this month:

- I learned I will most likely need a plasma transfusion during the transplant to reduce the amount of antibodies in my blood. So go donate your plasma and/or blood!

- I continue on with physio 3x/week. I think I am doing well despite the fact that I didn't do as well as 6 weeks ago on my 6-minute walk test. The physiotherapists haven't said anything about it afterward and keep upping my intensities so if they aren't concerned, I will try not to be too. I am at at the point where I can recognize everyone but don't know anyone's name. They had a potluck party last week and someone asked if I was going. I had to sadly tell them that the people with CF were not invited (it said it specifically on the notice...'CF patients are not able attend due to hospital policy'). Stupid policy. I want Christmas cookies too!

- Isaiah and I have been trying to do all the touristy things around Toronto. We visited the pandas at the zoo when my parents were down, have gone to some musicals, and keep visiting museums. There is no shortage of stuff to do in the city.

- There is nothing new from my CF doctors. They just tell me to keep doing what I'm doing. I had a visit today and I gained a little weight and my lung function remained stable. The doctor said she feels comfortable with me going bi-monthly as I will have my transplant clinics the other months. It's fine with me to only have one doctor appointment a month!

- I learned today that Ont will no longer directly bill NS for meds. They changed the policy last month and no one thought to mention it to me until now. This means I either need to get the meds shipped from NS or pay out of pocket for them here and file with the government to get reimbursed. Thankfully, I called my pharmacy in NS and they will ship my CF meds out to me so I'm not panicking but I don't understand why they make things as hard as possible for people. I don't know what happens with my transplant meds once I need those although my guess is that I will have to pay upfront and get reimbursed later. As if I want to have to think about paying for thousands of dollars worth of medication immediately after a surgery. Thankfully the CF nurse in NS is amazing and is going to find out for sure what is going on (no one had told her either, we seriously need better patient education).

- I have stopped having the dreams where I miss the call. Instead I've had a few where I am hanging out in NB or NS and suddenly realize that I need to be in Ontario for my transplant and how did I get here and what happens if I get the call!? I'm not sure if those dreams means that my subconscious wants to be back in the Maritimes or if it is just a new way of waking me up in a panic in the middle of the night. Either way it's pretty annoying.

- I no longer have intense panic about unknown phone numbers. Just a mild amount of panic. Unless I miss a number like I did when we were at George Strombo taping and then I'm back in intense panic mode. I had no message so I was pretty sure it wasn't the hospital (you would think that Isaiah not getting a call and my pager not going off would put me at ease but it didn't. Sometimes the mind refuses to think rationally). I only unpanicked when I googled the number only to realize it was a stupid 'I've won a cruise!' call. I really need to put myself on the 'no call list'.

-I am not discouraged about not having the call yet. Maybe by month 6 or 7 I'll be wondering when it is my turn but right now I still feel pretty good and have lots of visitors and activities to look forward in the next month. The average wait is 8 months so I could be here for awhile.

That's pretty much all. Who knows what exciting new developments month 3 will bring!

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