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!

Saturday, April 4, 2015

Tired of hospitals...

Spent the night in the ER. Woke up yesterday morning with the same pain and breathing difficulties I felt with my pleural effusion back in late February. Since I couldn't confirm crackle by myself (though the breath sounds different and I've learned from my cardio how to palpate) I went to a walk-in clinic.
The doctor there suggested I go the the ER siting that she use to be an ER doc and they can't tell anything without an CXR (chest x-ray). I went. It was a waste of time, long time.
I had the CXR and they couldn't tell exactly what was join ton because my hear reach all the way to the right pulmonary. I have a big heart! My blood-tests tested positive for blood clots, soI had to have a CT scan. Except they made me wait 12 hours with 3 doses of prednisone before I could even had a diagnostic test. That was 5 hours after they decided to medicate me. They could have given me the medications right when they made the decision (yes, all my allergies were on the triage form)
Ugh, exposed to another bath of radiation (equivalent to 200 X-rays). The CT scan came back clear. Don't you just like false-positives?!
I did figure out a way to sleep in the ER though: soothing music on my phone and a sock to double as a sleep mask.
I did learn that my weak lung is starting to collapse again: gotta hit the pavement and move more to keep it expanded.

Oh on a side note: the hospitals in this town don't know how to deal with congenital patients. When I was connected to the IV they didn't ass a filter. Four nurses had no idea what I was talking about and so I asked them to call the Heart Hospt. next door to learn. It took two calls to learn what I meant. Are they in the business of increasing risk for congenital patients? Looks like it.

Also, something more incredible happened: the girl/lady next to was also a congenital patient. I overheard, long story short we share the same cardiologist in Toronto. We also fired the same one here in town. She's also born in March. And we share a common friend in my neighbourhood. Just cute little coincidences... was totally cool and she's on my Canadian congenital patients FB group.

Wednesday, April 1, 2015

in other news

On a non-cardiac note, I just received word that the Mental Health Act of Ontario passed today AND I also received notification that my application was approved!
I now officially a psychotherapist!

Now to get my body work-able again.

This is the motivation I needed to drag me out of my "big disappointment".
Onward and upward.