Sunday, September 28, 2014

Taking the time I is serious.

I've been keeping to myself (mainly) the past several days. I have a lot of things to think about. I did have help from one scientist friend. She helped me figure out I have more questions for the surgeon. I am upset that I didn't get enough time to ask all the relevant questions I needed to ask but when I spoke with my sister, she reminded me that there was a heart that came in so it's not like they double booked me on purpose. I didn't realize the surgery he had to attend was a transplant. It makes me feel a bit better - because those things are miraculous in and of themselves and it's that work that I respect so much in Toronto.

So, I have a phone consult with the surgeon booked for next week and I'm also going down by train (just for the day) for another consult. A hundred and twenty dollars round trip same day, albeit a long day (leaving at 05:55 and returning around 23:00hrs) is not a bad price. Considering the hospital rate for the hotel next door is $160 a night, I'll do the train thing.
IF I'm even going to consider this repair, I owe it to myself to know what I'm getting into.

I'm still not sure. There are so many factors beyond risk and death. I do have to think about my "quality of life" now and whether I'm satisfied with my life as is. IE will I be alright dying where I'm at now or is it worth the risk dying sooner for the slight possibility of a longer, better life. I'm not a gambler by nature so this is hard. Actually even if I were a gambler this would still be ridiculously hard.

They did say, if I wasn't as "healthy" as I was in all other aspects of my life (i.e., eating, exercising, organs, etc.) they would NOT offer this surgery period.

Anyway it's a gorgeous day so I'm off for a hike (and yes, that is one of the reasons they are offering it to me: I am active and motivated despite the depression that can come with being this ill).

Wednesday, September 24, 2014


I met with my surgeons in TO yesterday.
I am cracking. There is nothing left in me to give. I fought my way back to life last year. I fought so hard I'm shattering into a million pieces.
By the end of this year, I will have lost EVERYTHING in my life. In Dec. 2012, I lost the stability that my health was, the career that I loved so much, my income, my home, my spouse, and most likely my life. I've gone from Ms. positive to "I can't anymore". I am done.
I'm not implying that the meeting in TO was grim but it wasn't great either. I really don't know what or how to write about it. There are options but both lead to death. And before anyone chimes in with "yes but all of our paths lead to death",  just stop. I know it, I've counselled on it and now I'm the one facing it. In fact I've been facing it square in the face, refusing to die for some time now. There is only so much a human being has in them.
Even Superman died.
No, I'm not comparing myself to superman but I think I did a pretty good job of averting death the past 21 months.
It can only last for so long.

Sunday, September 21, 2014


I did it!
I completed my first 5km "race". I walked, not ran. I'm not a runner. In fact, I don't think I'll ever be a runner even if/when I get repaired. My knees are not good. Towards the end of the 2k in May I tried running the last 200 hundred meters or so, just because my time was so slow but since then my knee has been making funny clicking & grinding noises. Ah well, I'm over 40.

So yes, the 5 km today. My time was 1:05:28 (chip) 1:05:35 (gun). I know it's actually not that great (compared to others) but seeing as my goal was to finish it in under 1:15 I'm quite happy. Not only did I do faster than I thought but I wasn't dead last. Not in my age or gender category. Actually there were still a chunk of people behind me. With 15,000 people in this "race" I was never alone. Unlike the May race there I was in the last 100 on the pavement, there were still thousands of people behind me. It actually felt awesome. Unfortunately I wasn't able to have my "transcendence" race all to myself. With that many people you end up talking to many folks, especially in the sick and disabled start. One woman was on high flow oxygen and we chatted for a bout 50 meters. She's waiting for a set of lungs in Toronto. She came (home) to do the race. That was so awesome to see. Another woman I met is now 'retired' from the military and has pain every day. Of course Rick Hanson (Canada's "man in motion") was at the start line in the "Sick/Injured" category ~ the one I was in. I was a few feet from him but I didn't bother getting a picture before hand as I was trying to deal with the thousands of folks there. For the first kilometre I really wanted to quit. I was already in pain and there was too much pomp & circumstance (in the way of thousands of participants and as many people cheering on). By the half way mark I really started appreciating the spectators. I had walked part of the (end) course a few times before so I knew when we were less than 1.5kms from the finish line. I put my power songs and and pushed it. Of course, me belle, along with other soldiers, were there handing out medals. She gave me mine and I puttered out. Sweaty, tired and high. I've never experienced an athletic high before. Now I have.

My whole walk was a metaphor of my journey thus far and to come. Once you push through the fear you can do so much more than you ever thought. It's not easy. No one ever said that, however it is possible. So many people give up and I'm glad I didn't. Though I would have preferred to have a solitary race, I am appreciative of the stranger I met at the beginning that motivated me to keep going. She represents all of the friends, acquaintances, loved ones and general great folk that have motivated me to keep pushing forward. I have to mention though, someone who has motivated me long before we ever met "physically": my nephew. Being my brother's son, he has my eyes (my bother and I have the same eyes/shape/colour/long lashes) so when I look into his eyes some days, it feels like I'm looking back at my inner child. He is the most precious being that has graced my life the past 11 months.

Friday, September 19, 2014

5k goals

Earlier in the year I gave thought to how I would become strong enough to endure open heart surgery or, basically regain my strength from a palliative year. Through Cardiac Rehab I realized that I really enjoyed walking. At least I did earlier in the year since I couldn't really do much of it last year. On a very lucky day ma belle would stick me in a wheelchair with a bigger oxygen cylinder (my requirements at the time) and we'd go around the block. It was such a gift- it meant the world to me. It may have only been a block away around the crescent but I felt like I was out in the world since I rarely got that opportunity .
So, while in rehab I gained strength. At first it came slowly and I was moving faster than the white haired ninety year-olds. It was so hard to accept my limitations. My spirit was so much faster than my body in January. Now here we are nine months later and I'm about to walk 5kms. I know for most people that's an evening's stroll. For me, I "trained" for 6 months. Towards the end of my rehab, my physiotherapist and I designed a program to increase my strength, and motivation to get stronger but stay positive and patient. I used short walks/races as motivation to get me from one marker to the other. I started with the 2k during Canada's biggest race-weekend in May. I think the biggest increase in ability and strength happened between the first few months to 2 kilometres. I really noticed the changes. For one, I would have less and less discomfort carrying my O2 cylinder. Now I barely notice it sometimes. It's more of a nuance than anything but the strength is now there to carry it everywhere.
In June I increased to the 3km with a smaller local "race". Though I did not have an official race during summer months I did increase - though I did slack off, like any good Canadian during our too-short summer months.
So here I am, 2 days away from the Army 5km. This "race" is a big accomplishment for many reasons. First, in my own physical journey from palliative to here. Ma belle reminds me that in those first weeks at the heart hospital I could barely walk down the hall in my CCU. Ironically, it was with the same physiotherapist. So here's my 100 foot journey.
This race is also a tricky one for me. As a pacifist I do not support war or any military things/events. More than 6 years ago a dear friend of mine came to town to run in the race and asked me to come support him. I did but it was hard. At the finish line there were tanks and memorabilia and "support the troops" BS that I had to remind myself "I'm here for him, not this pomp and circumstance". Then a year or two after that I met ma belle. A solider. Ooof. Through her I have learned a lot. I have come to respect who she is though I still do not support war. This race is as much for me and my struggles as it is for her and all the other soldiers: how they've been mistreated, left out to hang when they do their jobs. (Don't even get me started in the mental health aspect of it all. One of the reasons I've kept up with my certifications and registrations is I hope to continue the help that I've been a part of, even in a small way. Though I'd like to do more.)
So, there you have it. I've just explained why I was feklempt when picking up my race kit today. It means so much more than what's on the surface. I've come full circle and I hope this is the beginning of many Army "runs" (walks) for me.
Only time will tell - time, more medical procedures and faith.

See you at the finish line.

the phone call came

Well wouldn't you know, not 24hours after posting for the first time in months did I receive a phone call from Toronto for my meeting. I get to go down, find out exactly what the reconstruction entails, and meet the surgeons. (Yes two, since my case is that complicated). I've already met the aenetheseologist and though our personalities clash, I wouldn't want anyone else to put my to sleep. She has a way with arterial lines that don't bring me to tears. Despite the weird bedside manner I'd trust my life to her. Oh wait, I already have!

I am very nervous. I need information in order to process things but as I'm so rare, there is no info to go on. I have already read and now understand how the bypass machine works. I have an idea about reconstruction when the case of TA is in children but the fact that I'm 41 changes things. My body has had time to adjust and create new complications. More specifically, while in TO last year I learned that I have the jackpot of congenital illnesses. I don't just have Truncus Arteriosus, but also VSD, bilateral shunt, pulmonary hypertension (in my left lung only, thankfully), MAPCA, and all sorts of weird wiring. So when they say reconstruction, sometimes I wonder why they don't just transplant the heart. Actually I do know why: because I would also need new lungs having PH and all. We've already explored that route and though I am a candidate should I choose, the stats on that procedure for me, are not very good. Less so than this surgery. I believe. I will find out in a few weeks.

There is still a chance that I might not choose to go through it. They keep saying "what do you have to lose" but I don't think they realize, my LIFE. A few years with my (gorgeous) nephew is better than  only a few more months (surgery would be scheduled for later this fall). At least I would see him turn  one and hopefully take his first steps. I am thoroughly enjoying all the time I spend with him and though he is not yet walking or standing independently, I love when I take his hands and walk with him, he leaning into my legs looking up at "auntie me". I want to be around to run after him.