Wednesday, 8 October 2014

Waiting Game: 1 year.

It's been one year. One year and silence. Sometimes I wonder if they've forgotten about me. I've had no false calls, or even a wrong number call on my pager. Yes, transplants are still happening, there have been 86 lung transplants so far this year in Ontario. Last year, there were 131 transplants so I would suspect that there will still be quite a few more in the next 3 months. When you consider that in 2004, there were 62 lung transplants, the fact that there were 131 last year is incredible. The science and technology has improved at an incredible rate.

There are currently 85 people waiting for a lung transplant, 28 of those are type A blood like myself. The stat that drives me crazy is what the Trillium Gift Life Network calls the 'conversion rate.' How it works is that every doctor and hospital in Ontario is legally required to notify the Trillium Network when they have a patient they consider a candidate for a transplant. The Trillium people get in touch with the family and the donation process continues from there.

The notification rate is in the 90% level for all hospitals in Ontario which is fantastic. However, when that is compared to the 'conversion rate', or the rate at which those people actually become organ donors, that's when it gets depressing. The conversion rate from April 1, 2013-March 31,2014 was 52% for Ontario. 52%!!!! That means that 48% of families didn't think that the organs of their dead loved one should be used to enhance another persons life. Because the worms needed the organs instead. Arghhh!!

(Yes, I realize that just because a doctor screens the person as eligible, they may not be after some furthur testing. But discounting those people, the conversion rate should still be higher than 52%.)

Less than 5% of people who die in an Ontario hospital are actually eligible to become organ donors. That means, despite most people's best intentions there is actually a very small change that you'll actually be eligible. Which is why even more important for the people who do qualify to actually donate. Can we please get an opt-out system now?

Alright, so I got a little side-tracked with my recap the last month which was actually quite busy:

- I was hospitalised for 5 days. Usually I'm in for 2 week stints but because the IV meds weren't doing anything, they sent me home on really strong oral antibiotics and told me to get better at home. I am feeling better now.
The medication took a long time to kick in and I was getting quite panicked that they weren't working at all. However, it seems 3 weeks later, they have finally started to do something about my lungs. I'm still slightly panicked by how long that took. It's just another sign that my lungs are crap and I need a transplant (no surprise to anyone).

-  Physio has decided that I need to be isolated while exercising. My new transplant coordinator apparently read my file for the first time this month and informed everyone that I needed to be isolated from all. The physiotherapists don't really know what to do with me so I've either been given a 8-830 slot (urg so early!!) or 230 (slightly better).

I now only go twice a week on Tues-Thurs and am separated from all by a barricade. It's kind of embarrassing when people try to cross the barricade and the physiotherapist tells them to 'stay away from that side of the room' while looking directly at me. Considering I use the same washrooms, elevators, and oxygen refilling station as everyone else, I feel like it's kind of pointless and more for the benefit of the some admin person than everyone else.
Don't cross the barricade!
 -  Despite being in hospital and sick for most of the month, Isaiah and I still made it out to see a play, we had one final swim at my cousins pool, and I went to a few pottery classes. I decided too late that I should sign up for the fall pottery class session as I wasn't sure how long my hospital stay would last so by the time I got around to it, all the classes were sold out.

The instructor tried to get them to make an exception for me but the higher-ups refused. So I it's drop in classes for me for the next few months. I'm trying to take it as a sign from the universe that it means I'll get my transplant in the next two months so I wouldn't be able to attend the class anyway. Although considering I've found signs from the universe about my transplant for the past year and none of those have panned out, maybe the universe is just telling me that I need to not procrastinate with decision making.

- We also had some visitors last month, more arrive today, then one next week, and at the end of the month. When I talked to the psychologist yesterday he asked if I was missing home or my family. I replied that I honestly see my family more now than I did during most of university. It's been really nice as we go do all the touristy things when they're in town. Isaiah also went home for a few days last month which was great for him to both 1) get a break from here and 2) spend time with his family.

It's been a year with a lot of ups and downs. I was pretty bummed out (one might even say depressed) last month when I was discharged from the hospital about my lack of transplant and had pretty much lost all hope of a transplant. I'm feeling a bit better about it now. The psychologist yesterday told me I need to go easier on myself and that there is no magical way to force yourself to feel better. Sometimes you just need to be depressed for awhile in order to cope. I think hearing that made me feel better.

I know I have been fortunate enough to have spent all but 5 days of the last year out of the hospital and participating in activities I enjoy. This year has not been a year where my 'life has been on pause' or 'on hold' (what do people even mean when they say that? I'm still living even if I don't happen to be employed. Or work-centric society drives me crazy).

It's been a year where I learnt to focus on other aspects of my life. My plan on learning how to knit mittens didn't go very far but I have improved my art skills, explored Toronto, and, randomly, fell in love with pottery. I've also realised even more the importance of my friends and family. I've relied on them so much the past year, they're my amazing support system that I would be lost without. I could go on and on but this post is turning into a novella so I should probably stop. Also, my latte is getting cold.


Sue said...

I can do mittens if you want a pair...but pottery ? will be honest never tried. And your therapist sounds wise ... I've always thought they have made depression out to be a bad thing when actually it's what we all feel at times and if we learn to embrace it, can lead us to different insights and places of enlightenment. :-) that sounds weird even to me..oh well beer and ginger cookies will do that to me when I am tired. love you tonnes and your pottery is beautiful!!

Dave VanSlyke said...

Allow yourself to be human and feel bummed out once in a while. You have managed to work yourself one year closer to your goal of a lung transplant and do a whole bunch of great stuff in the process. The support of family and friends (even if they can't be there) is immeasurable - soak it up. Super kudos to Isaiah - he's a rock star.