Sunday, April 12, 2015

Spring came early today

It was a beautiful spring day here in town. I spent some time downtown with one of my favourite people. It was really  nice to be out without supplemental oxygen. Well, not having to wear it full time that is. It was still a pain in the butt carrying the small tank. Though I am able to carry the ones under 7 pounds, after a while, it strains my chest. Thankfully I sat much of the time, sharing a margherita pizza on the patio. When I got home, I went for my usual 'rehab walk'. I'm in the transition week where I move from two shorter walks per day to one longer one (increasing the time only be a few minutes every second day). Everything is gradual. In fact, I still can't drive yet. Though I personally think I can. I can shoulder check, I've graduated to the front seat and I even opened a jar on my own the other day (which means I can move the steering wheel quite fine). However, I heed to my miracle-making team. They are the experts so I'm not daring to take the wheel without their accordance.

If I haven't mentioned this before, what I have noticed with my exercise is my continual augmentation in room-air oxygen saturation. It is such a relief to see it steadily above 92% (upon rest) as, even a month after surgery it was still only between 77-84%. It's amazing what exercise alone will do to a post-surgical body. Opens the collapsed lungs. I can't say I'm perfect, I have been lazy with the spirometer exercises in the house. They just suck. I know I need to do them as I still cannot take a deep breath without hurting and the pain isn't sternal, it's at the base of my lungs: exactly where they're still not puffed up enough (it's late, I'm not so technical in my speech these days). I've also noticed that my short term memory, though poor to begin with, is frighteningly deteriorating. And for important things. I got off the phone with my nurse on Friday (she calls every second day with the results of my INR levels in order to dose me: the side effect of warfarin: thrice weekly blood tests) ~ anyway she gave me my dosage for the weekend and as soon as I hung up, I couldn't for the life of me recall what she said.  When I thought to phone back it was "after-hours" so I took an in-between dose this weekend and will hope for the best (not smart, I know).

On Friday I had an appointment with my local respirologist/pulmonlogist (Pulmonary Hypertension specialist). He doesn't understand why Team-Toronto took me off my Designer Drugs (DD) for PAH and wants to put me back on, but on a newer class of DD's. I actually agree with him. If TO is so concerned about my PAH actively killing me, why are they not drugging me (not that I want to be on exorbitantly expensive drugs, but I'm not willing to undergo another surgery to deal with it (yes, they had the nerve to bring that up, already). I gave him "permission" so to speak to put his spoon into the pot (talk to TO directly with his opinion). I also very much appreciated his goal to get me off Warfarin and Amioderone (drugs for A-fib) once my heart sticks to its new rhythm, hopefully within 6 months. This plan, I can align with. Side effects of Amioderone screw one's thyroid long term, and currently give me body/myalgia pain. The kind that massage or my trusty old "Tiger Balm" won't respond to.

Alright enough for now - the humorous is connected to the scapula. The scapula's connected to the collar bone. The collar bone's connected to the sternum...and it's all in pain now. You just don't know what it takes to move until something (major) is broken. This coming from a girl who's never broken a bone in her life until it had to be sawed in half nine weeks ago. Holy crikey!