Riki's Misadventures At Life

The Mortality of Chronic Illness

When I was younger, I thought that seeing friends die would be easier to handle as I got older, like maybe I would become desensitized to it, but if anything, it’s getting harder. Those of us with chronic illnesses know that most likely, it’s something with our illness that is going to take us down. For the most part, however, unless we’ve been tipped off otherwise, we believe that it’s a long time down the road before it’s our turn. For me it seems that there’s another one every few months, and for a lot of them, I don’t have any real personal relationship with them, but there are the odd handful that I do. For those ones, when it happens, even if I knew it was coming, it hits me like a brick. It’s that feeling that I thought would be easier to deal with as I got older. The frequency makes me wonder which of us are next. There’s no way of knowing, because some are sudden, while others are a long time coming. It’s this that makes me wish I could somehow leave the chronic illness community, and live in the sweet ignorance of the general population, the healthy people who don’t have to face this reality, that their mortality can be taken from them as quickly as snapping your fingers or flipping a coin.

I think I’m coming to a crossroads in life…

I’m thinking about coming off the transplant list voluntarily.

For those who don’t know, I was recently told that I am technically ineligible for transplant because my body mass index is 10 points too high. As far as I know, I am still active on the transplant list, but there are discussions going on about whether or not I should stay active on the list.

With the possibility of being inactive on the list indefinitely because of my weight, I’m starting to wonder what the point is. It’s possible that I could bring the weight down, but it’ll probably take years.
I’ll be inactive on the list anyway, so maybe I should think about embracing dialysis for life. If it’s going to take a miracle to get a kidney anyway, because of how hard it is to match someone who’s already had two transplants, maybe it’s a dream I should give up on, and work on other dreams that I’ve been putting off because I wanted a kidney first.

I don’t really want to be on dialysis for the rest of my life, but from the looks of things, I’m going to be anyway, whether I’m active on the list or not, and all being on the list has given me at this point is false hope. Maybe coming off the list will give someone else a better chance.

I’m just not sure what I should do. All I do know is that I don’t really want to fight with doctors and their arbitrary rules anymore. This is the only way I can think to do that, besides giving up completely, but I’m certainly not ready to do that yet.

How I love being a guinea pig. Actually, no I don’t, but I try to be a good sport about it.

It’s 8:30am right now, but I got here around 6:40am. We’re in the middle of a heavy rainfall warning, and they were right about the heavy rainfall part. I’m still waiting for the Ark to show up. Anyway, like I said, I got to the shiny new dialysis unit in the sparkly new section at the Queen Elizabeth Hospital (it has a long, fancy name that I don’t remember) that for the sake of simplicity and my right hand (i’m typing this on my Blackberry) i’ll refer to as the ACC, in rain that i’m thinking must the beginning of God’s cleansing of the Earth, and the door was locked! It was okay for me, as I was safe and somewhat warm in my mother’s car. We waited for someone to come open the door, and were content to wait, until the fellow who comes by cab came. It was at this point that Mom picked up her phone and called the unit. They didn’t know the door was locked.

Next was that everybody seemed to show up at the same time and nobody was ready for us. We tried to fit in the waiting area, but there wasn’t enough chairs, and we were all cold and wet. Nobody could find anything. Tourniquets, face cloths, blankets, you name it.

Then, one of the nurses came around with those little white paper bracelets for us to wear. It’s required, from what I understand, which is kind of dumb. It’s not like any of us can go anywhere. I also think the air conditioning is full blast, even with the cold rain, and there’s no way to turn it down from here. It’s controlled by someone, I imagine, in a dark room, with a bunch of screens showing the frigid temperatures throughout the hospital. Also included is the amount of chattering teeth, mine included, in the building.

I still have 3 hours. God (the entity who’s currently flooding the parking lot with angel tears) only knows what surprises are in store.

Attached is my window seat view. If the picture doesn’t show, i’ll upload it again later.
Sent on the TELUS Mobility network with BlackBerry

A sombre anniversary

Today, May 25th, 2012, at 10am, it will be 8 years since I started dialysis. When I began, I didn’t think it would last this long, I was thinking it would only be two, maybe three years. I thought I’d get another kidney quickly, like the first two times, or if it went longer than three years, that someone in my family would step up and offer to give me one. But here it is, 8 years, and no one has ever offered. IT’s kind of sad, really, to have a family such as mine, full of cousins on both sides, and not one has ever offered. I exist now only because I am connected to a machine for four hours a day, three times a week. Life support. Without it, I will die. That will be my existance for the rest of my life, it seems, as I don’t believe I will ever get another kidney.

How I view my time on dialysis

I rowed my boat out to the middle of the lake. All seemed well until my boat sprung a leak and quickly sank. I was alone and treading water. Every once in a while someone would come along in a nice boat, see me treading water and say, “you look to be doing okay. You don’t need my help.” After a while I started to get tired and it was getting harder to keep my head above water. Still, everyone who came by thought I was fine and didn’t need their help.

This it how it feels for me on dialysis. Everyone knows i’m still in the water, but they think i’m okay and don’t need help, when they couldn’t be more wrong. You can only do dialysis for so long before it takes everything out of you. I may look fine, and for the most part, my body does all that it’s supposed to, but mentally and emotionally, I could still use that hand to pull me out of the water. I see so many people who have friends and family coming out the woodwork, offering to donate kidneys, but no one in my family has done so. They’ve left me in the water, and i’m tired. I’m not sure if I can hold my head up much longer.