Trikafta- Week 3+3 days: A new chapter

So since last week things have been improving mostly with one exception. I have been living a different life for sure. The world I am living in with no coughing is wonderful. It’s very new but it feels like I should hav never struggled before. I guess God thought I deserved a break. I have been rowing faster, walking farther and doing harder workouts. I do have to confess though. I took 3 days off from all of that. I have not been able to take that break in years. Usually when I’m not exercising its because I have gotten sick and just can’t. It was such a glorious holiday with no guilt or consequences.

My issue has been my vision. I went for an eye exam and sure enough my distance has been weakened…again. I had a full eye exam just after I had that CT scan on my sinuses and the doc was happy with my vision then. That was in October. I noticed the change about 10 days ago and its gotten so bad that I stopped driving 6 days ago. I am still waiting for the new contacts to arrive. It’s hard to walk or look at long distances with my brain struggling to see the stuff in the distance. I am hoping that this new prescription will get me fixed up. I hope that my vision does not continue to decline. The only other symptom I had last week was a head cold. I lost my voice, was a little stuffy and a bit of the mucous returned which I could easily expel. No big deal. Today I have been a Tasmanian devil getting my Christmas stuff up from basement, making gifts for my clinic team, cleaning, cooking and just killing it.

I find myself stopping throughout the day and just taking 10 deep breaths. I am grateful for each one. My sleep has been sound and hard. I have a new symptom and that is drooling in my sleep. It’s funny because I have never drooled in my sleep, mostly because I was constantly dehydrated.

A couple nights ago I was going for my daily 1km row. I put my oxygen on and started to pull. I was surprised that i was pretty slow and I figured it was from my head cold. I managed to get it done but it took me 8:35. That’s a whole 86 seconds longer than I rowed the night before, I looked around and to my dismay my oxygen cannula was NOT plugged into my oxygen! Frack! So that was my very first row on room air only, in about 4 years. So in light of that I attached the cannula to my oxygen concentrator and did another 1 km. It improved by 75 seconds! I was proud of myself and relieved that I had not digressed. I prefer to row with my oxygen.

Rowing with no oxygen
Rowing with oxygen

I have clinic next week and I am looking forward to seeing where these airbags have expanded to. Normally I can breathe in about 700ml of air. Normal people can breathe in 4 litres. I am sure I am over a litre at the very least. I hope I don’t have too high of expectations. On the other hand, who cares, I feel amazing. 25 days ago I was very sick and living day to day. Now I see the light the at the end of the tunnel and its not a train. I am drinking up every minute of it. While vacuuming my house I feel like I won a gold medal. It’s the little things.

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