Tuesday, March 31, 2015

Set-backs

There are things that happen in living with post open-heart surgical recovery that I did not anticipate: low affect. Over the years I rarely get "down" anymore. I'm able to keep myself up and going, moving forward almost all the time. Affect is human but I didn't anticipate the downward turn since this is something that I was looking forward to and preparing ad nauseam. Meh, such is life.

I'm disappointed because I returned from TO (yet again) from last week's procedure. The intervention did not occur for the most ridiculous reason ever: lack of my blood type in the bank. I understand that they want to be cautious and prepared to have back up in case something happened during the intervention that would result in needing blood products. But really? It means that I'm back home, still dependent on supplemental oxygen. I wanted to do away with this tube once and for all!

It's been 8 weeks today, I'm now able to walk 1 kilometre (with the walker) and can lift a small oxygen tank (2.1kg). Not much more. I do feel a bit stronger, but still can't do things like sleep on my side, reach for things, take a bath, drive, sit in a car (back-seat) without a pillow between myself and the seat belt.

Oh, out of boredom I looked up top-rated (congenital) cardiologists in North America and a member of my care team is ranked #3. I think I'm in very good hands. I do trust all the heads that come together every Monday afternoon (their clinical meetings) to make decisions regarding best possible proposals and outcomes. Funny, my own clinical meetings used to be on Mondays. I'm so out of the loops now I've decided to start some advanced training in traumatology while I wait for the Mental Health Act to come into effect. Therapists across the province are waiting for it so our applications can finally go through and be certified by the (awaiting) College of Registered Psychotherapists of ON.


Wednesday, March 18, 2015

Surgery: I'm alive!!!!

I'm alive.
I had full reconstructive surgery last month (6 weeks ago actually) and I'm alive.
Some days it feels like I'm barely functional. The guidebooks I was sent home with suggest that I should be further along in my healing, to the point that I could drive soon. Not so. Those books were also written for a specific audience: coronary patients.
In congenital cases, things get complicated. Recovery all depends on how surgery went. Mine, although "successful" was extremely complicated and last over 14 hours. Yes, fourteen hours! I was in ICU for a week; they expected a little longer actually, but there was an outbreak of C-difficile in CV-ICU so as soon as folks were stable enough, we were moved to the floor.
I remained at TGH for just over 5 weeks and was discharged only to have to return next week to finish the job. No, i'm not returning for surgery, but for a cath. You see, though the surgery was successful on the inside (complete reconstruction, new parts I was not born with) I am still dependent on supplemental oxygen. We're all a bit disappointed and don't quite understand how their initial theories/plans didn't quite remove the cyanosis.
Part of me thinks my body just needs time to heal. I mean, 14 hours and bleeding out my entire body contents of blood, experiencing hospital-acquired pneumonia, pleural effusion, etc. it's no wonder I'm taking much longer to recover than what the "book" states. Though, according to the congenital team, at first I moved much quicker than they anticipated. I wasn't "out" for 3 days after surgery. In fact, I was awake the next day - still intubated mind you, but "awake" nonetheless. They continued heavy medications to slow down my awakening because in the end, it wasn't comfortable to say the least. In fact, being intubated, awake and burning up due to 54 transfusions (yes, you read right) was not fun at all. I've been through an abdominal surgery without narcotics over 10 years ago. This was far worse. I don't know how other congenital folks do numerous open heart surgeries. (In the past 5 months of research, making this decision I met many other congenital folks in this part of Canada!). I never ever want to go through that again. Ever.
Today, I'm at home, feeling bored but not being physically able to do much either. I am in constant pain since the only things I've been able to take since the first week of recovery has been extra-strength Tylenol. Yes, medication that regular folk take for headaches I've been downing for a sawed sternum, bypass tube and chest tube holes (I call my bullet-holes). I want a medal just for that. I remember why I did my last surgery sans narcotics: I can't do them. I get extremely sick. Not just a bit sick, but really sick. I experienced hallucinations, delusional paralysis and difficulty breathing (to name a few side-effects). Pain is no fun, but being on opioids and narcotics is truly horrible (from my experience anyway).
My trusty old Toradol (ketorlac) is contra-indicatory to blood thinners so I couldn't even use that.
Anyway, that sums it up.
I got lost in all the details that are all a blur now.
Moving forward I'm hoping that the next procedure (next week) will make the difference. If not, the one after that. My surgeons at Sick Kids are some of the best in the world (and from other parts of the world) that they planned ahead. Anything that they anticipated on completing in the future was set up during surgery that they could do it via cath. There's so much forward technology there that it blows my mind. It also makes me so sad that I wasn't offered this earlier. I often wonder how different things could have been if a referral to them was the next course of action. And yes, sometimes I wonder if I have a legal case. Then I wonder how many other people had to die because my ex-cardiologist (I fired him over a year ago) couldn't bother to refer his extremely sick patients to a team that knows what they're doing. Through the congenital network I know I'm not the only one who's gone through something like this, though mine has been the most dramatic case of ..."neglect" (I don't know what to call it).

When I feel like it I'll post more about the surgery. Like how I now have someone else's pulmonary artery in me, a valve where there wasn't one before, etc. Time to go for a short walk. I have a 2k I registered for in May though I'm not sure if I'll get there this year. Recovery is moving at tortoise pace.
cheers!