Thursday, 26 May 2016

18 months post-transplant!

It's my 18 month transplant-versary! Woohoo!!!

I heard from Toronto and I'm approved to go up for my assessment at the end of June. I can also stop my antifungal and antibiotic, yay!! (this does mean that I'll need more bloodwork as my anti-rejection levels change with the stopping of the meds but I'll take it.) The team there is planning on sending me to the oncology team at Princess Margaret (the cancer hospital in Toronto) when I'm there for a second opinion on my cancer.

Does that mean they don't trust the Halifax team? Or do they just want to hear from their own people? Either way, I guess it can't hurt and might be nice to talk to a doctor who has actually seen this type of cancer with someone post-lung transplant. I'll have had my PET scan and follow up appointment with Halifax at that point so hopefully they'll have all the latest information. Not sure what I'll do if the doctors disagree on a follow up treatment plan though....

A few weeks ago, my "Facebook Memories" reminded me of how last year I cycled 40km from Toronto to Oakville. It's a great memory but also annoyingly reminded me that I'm not positive I could do that today. Stupid cancer, I'm not in the physical condition I had imagined I would be once I started recovering, post-transplant. And I had been getting to a really good place physically before I got cancer but my low hemoglobin in September brought it all crashing down as it's hard to do much when you feel faint upon exertion

After all the chemo, fevers, and inactivity during all my hospital stays, it seems like I have to build up everything again. It's so much work and even harder when there is no gym in the house (I loved having the free gym in our condo building in Toronto). I mean, we do have weights and exercise mats at home but it's just not the same as an actual gym-gym with treadmills and rowing machines and people to secretly compete against and aspire to be.

Don't get me wrong, I'm still way healthier than I was pre-transplant. I mean, I can breathe and am alive so no complaints on that front. I just had somewhat loftier exercise goals post-transplant than I think were realistic. Although in my goal-planning, I didn't factor in getting cancer. I thought I would be running 10ks and cycling to Amherst at this point, training for a marathon, lifting huge weights, hiking mountains...realistic goals like that...

I see posts of people running 5km three months post-transplant and I don't understand how they do it. That would be amazing if I could do that now, at 18 months, so I've decided that is my goal for the summer (if I can manage to run without busting up my knee again). Not even to run in a event anywhere, just to run for myself would be fantastic. We'll see how well that works. First I need to fully recover from my face plant a few weeks ago (yes, I'm still aching, my chin has healed but my ribs still hurt).

I did manage to go on a little celebratory hike today before picking up Isaiah from the airport. I could feel that it was humid and my lungs weren't a huge fan but I could breathe! It felt wonderful. When I compare where I was two or three years ago to now, it's basically indescribable.

This is why we fundraise. To support research for CF infections. Research and funding for transplants. Research for CF related cancers. Research for CF related diabetes. Funding for CF clinics. Funding for patient support systems. Funding for organ donation awareness.

All without out, I wouldn't be here today enjoying this weirdly humid but beautiful day.

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