Sunday, November 15, 2015

2 years ago

I hope this feeling never goes away - I do hope to manage it better.
It's the feeling of being overwhelmed with gratitude, marvel, disbelief and miracles. If "miracles" can even be an affect (it's not, but it does create great effect).
There are moment when I stop and breathe deeply into the knowledge that I am alive.  Being November, I think back to 2013, "the palliative year" and how I was approaching the end of my expectancy. It's also the month I patiently waited for a bed in Toronto, for the pre-heart lung transplant assessment. That month my body went through so many tests. At pone point in the testing I reached a bitter-sweet moment: my body was very strong and healthy, aside from what was going on (lungs, heart). I was told I had strong bones, strong liver and kidneys and good overall organ health (again, minus the organs in question).

Back to that feeling: two years later, I'm hearing. I'm doing what I did 3 years ago (weird that, a "360" as I mentioned in my last post).

I want to write about the past 2.75 years. Work keeps me so busy. I love parts of it and hate other parts. I hate the pitiful pay as I know I can make so much more now. I am slowly looking into private practice but am not ready to venture out on my own, nor do I have the business skills to properly sustain a lucrative professional business. It will get there, it's just not here now. I'm so glad I lived as if there was hope last year. It's when I submitted my portfolio to the newly (at the time) forming college I now belong to. That was the smartest move I made regarding my professional life.

Regarding my whole life: I keep shaking my head in awe. I am still here. I lived through a palliative diagnosis to see the other side. I lived through open-heart reconstructive surgery. Appreciation for the skillful team I have is... such a lousy sentence for the life they gave me!

Monday, November 9, 2015

lost...

in work land!
So ya, I'm back at work. It's odd and weird - like I never left.
Yet this whole life happened to me - this entire 360.
And yet everything's the same.
It's weird and odd.
I'm not quite sure what to do with it.

Tuesday, September 1, 2015

Chapter closed

It's official:
this part of my life is done.
Chapter closed on 2.75 years of palliative, rehab, surgery, rehab, no work.

This doesn't mean there isn't work to be done in the future, but it means this chapter is CLOSED.

Moving back into life for real, earning a living again, being able to finally leave the country. 

As a approach this new year of 5776 (Rosh Hashanah) I have lots to be grateful for, lots to look forward to.

Saturday, June 20, 2015

wrapping up the past

Finally, I started writing the cardiologists that gave up on me 2.5 years ago.

I am on page 5.
It is only a draft but...

How do you say "f-ck you" for leaving me for dead?

I also started writing a (thank you) letter to my blue-eyed Britt surgeon. My contact lenses are a little fuzzy (from the wet-eyes).

How do you say "thank you" for giving me life?

Saturday, June 13, 2015

another piece of 'bling' for the wall

This morning I completed a 3k "race". Of course, as you know, I'm a walker. I don't run, can't run and shouldn't run. This race is really no big deal. I came in last, as usual for smaller races. (I like the huge races because I'm never last.) I can't wait for Toronto this fall. I need a medal from the city that fixed my broken heart.
Back to today.
I've been coming off my first post-surgical cold/flu. It's my first in about 3 years because, thankfully, people have been very cautious around me due to my health conditions. Well this one hit and because I had pneumonia, heart failure, pleural effusions in the hospital, my lungs are more so susceptible to prolonged infection. Though I'm no longer feverish or bed-bound I'm still coughing up a lung, or a sternum as it really feels. Last night I got maybe 3 hours sleep, in two sections. I couldn't get to sleep until at least 1:30 (due to coughing) and woke up just after 3. I was awake coughing up phlegm (TMI I know) until about 5 when I fell back to sleep for another hour and a half.
Upon waking I really thought I wouldn't be completing this 3k after all. I went anyway as my dearest was doing the 5k. For the first 300 meters I thought to myself: "leave. What are you doing here anyway, you proved you could do this one last year. Go home." As anyone who's done a course (walk or run) knows there's that yuck part where you want to quit because you're not even half way. Then, if you allow yourself to get past that, there's a "sweet spot" where, though you're not at all close to finishing, you're about half way and your strength comes out. A little voice of a marathoner friend of mine said to me (as she is known for saying) "getting to the start line is half the battle". Yup. Ok, so I'm past the start line. I really wanted to leave - the bling wasn't worth it as I have bling from this particular race already. In that sweet spot I thought back to my first few steps in ICU, how hard it was to walk out the room and how I thought I'd never be able to stand up straight again. The horrible visions I had in the ICU (anaesthesia induced hallucinations) came back to me. It pushed me further.
Eventually I made it to the finish line and it was so nice to see my dearest there.
So much, so much...life and death stuff has occurred in such a short span of my life. I visited work yesterday. Things have changed, but many things have still remained the same.
It's almost like none of this trauma, none of this dying ever happened. Almost.

PS- Not only did I finish, I beat last year's time by a full 6 minutes and 20 seconds all still walking.

Sunday, May 31, 2015

Hair loss - more than a cancer issue.

Great I'm losing my hair.
At first I thought hair-loss was typical after surgery. The body's gone through so much trauma. It's been four months and I shouldn't still be losing clumps of hair every day.
I looked up the side effects to my (new) meds and wouldn't you know it, hair loss is there. Apparently it's a rare side effect, but I have it.
My dosage was already cut in half during last month's visit at my request (because of other very serious long term side effects).
I'm going to ask my Cardiologist if there's a better alternative and if there isn't should I shop for wigs?
I'm not bald but my hair has gone from thick Mediterranean style coarse hair to wispy fine Caucasian hair. This after I recently *finally* embraced the wild mess that is my mixed hair (texture, thickness, partially straight and partially curly). The best hair-cut of my life was achieved shortly after my return home (a friend of mine is a former stylist so he still cuts hair, selectively). With the same hair cut that accentuates thick watery hair, it now looks all floppy because my hair is lifeless.
I know I could have more serious post-op issues, and I do, but this one is tough because I'm not a cancer survivor. Congenital heart disease treatment does not prepare you for having clumps of hair in your hand with every morning shower.

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!
Yes!
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.

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!

Friday, January 23, 2015

upcoming surgery

The clock is ticking.... the countdown is on. I'm itching to get sawed open (who would ever say this, I don't know).
Under the light and energy of the next full moon I will be cut open, my heart being repaired. Finally.
I recall a time when I used to count how many full moons ma belle and I enjoyed together. We stopped counting. A lot of things stopped. I still look up at the moon, noticing her phases. For different reasons now.

Fear and excitement are just two sides of the same coin called anxiety. Same energy, different manifestations. I have moved from fear to excitement. And sometimes back.

I'm looking forward to getting of oxygen.
Let's get this done!

Friday, January 9, 2015

I have a date...

...and I don't mean in the romantic sense.
In less than a month we'll know whether I survived or not. I cannot believe how fast time is flying. A few weeks ago I felt like it get here fast enough, feeling relatively prepared with lists and questions etc.. Now I feel a bit rushed. I haven't finished doing all my cooking and freeing - so that I have something to eat when I get back in late March/April? I still don't even have my new Power of Attorney forms signed. Out of everything, those are essential!
I have found car storage but haven't yet written a legal rental agreement. My car has had problems lately. I shouldn't complain as I'm privileged to own a car outright and am well enough to drive. However, ever since I moved away from Honda I've had nothing but problems. I will never do that again.
I've also been busy with the college of psychotherapists. Though my application went in months ago, they are only now reviewing it (they have several thousand in this lovely province of ours) and though I though I attached ever record known to my career, I was still missing some things. Having to go back through that it annoying at best.
In the weeks that remain I am finding a stillness I haven't experienced in a long time. It's almost an acceptance or serenity. I recall early on that acceptance doesn't mean liking something, just accepting what is. I fought long and hard about that. I found it necessary to like something and if I didn't "who would I be in it/accept it". The older I get the more I realize there are situations and people that just are. I have no control over the outcome of this surgery. I cannot change if I die. I can prepare, stay strong, healthy, positive, but I cannot "make it be". I am doing everything within my power and letting go of the rest. I've realized that there's not too much in my power beyond exercise, eating write, prayer, meditation, keeping active, getting my booster shots (vaccines for you crazy anti-vaxxers!!), and generally being positive. That means there are less and less toxic people in my life. That's jus the way I like it. I found I'm more hopeful, more at peace. Sure I still can't change some of the things I don't like about my current living situation but none of those toxic people could influence that - in fact, having them in my life only made things worse: gave me the illusion of control.

For now I'm taking care of the "little things" regarding my surgery and comfort. I've designed a little "how to give comfort to (me)" while in ICU. It includes play-lists when I'm feeling anxious, aromatherapy to facilitate deep breaths, advocating for me, etc. etc.