Riki's Misadventures At Life

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.

Dialysis is not a death sentence, nor is it just for grandparents

I spent a bit of time today watching some videos that were aimed at possble future dialysis patients.  Some of what I watched were patient success stories.  While that is great, and there is a greater need for patient to patient support, I noticed a few things. 

One, so many say that your life doesn’t have to stop when dialysis starts.  While I don’t have any issue with that in itself, as it’s very true, life doesn’t stop when you begin dialysis, but I don’t really undestand why anyone would think it would.  If they were properly educated, they would know that dialysis is a treatment meant to prolong life, not end it.

As anyone who’d been following me for a while knows, I’ve been on dialysis for a little more than six years, and have had kidney disease for nearly 20 years.  When I was on dialysis as a child, I was also in junior high school.  I didn’t see myself any different than my friends, except that I was hooked up to a machine at night to clean my blood.  As an adult, I don’t see myself any different than I did then, I still have to be hooked to a machine to clean my blood, and I don’t look any different than anyone else.

When it comes to living life, I don’t think I’ve missed out on anything because of dialysis.  I have routinely travelled to New York since 2007 to visit my best friend, and I’m going to Ottawa next month for a concert.

Something else I noticed, all of the people in these videos were older, over the age of 50.  It makes it seem that kidney disease is something that only older people get, which isn’t true.  I was on dialysis at the age of 12, and there were many who were younger than me, both on peritoneal and hemodialysis.  If these videos were meant to be instructional, there should be some there for parents, how to cope with their child’s illness, and how to explain the illness to their children, and not just the ill child, but their siblings as well.  My little brother was 6 when I got sick, and he didn’t understand any of it, even today, 20 years later, he still doesn’t understand all of it.

Dialysis is not the death sentence that television makes it out to be.  It’s just one of the treatments that are available to kidney patients.  Another tv myth is that a transplant is the be all end all cure, however, it also is just one of the treatments available.  A transplant is not forever.  I know this, as I’ve had two of them

The Fistula Saga: Part Umpteen

I don’t know how many of these I’ve written, and I’m too lazy to check.  I figured it high time for an update, so here it is.

My fistula has been in use now exclusively since sometime in April.  I’ve made my way up to the 15 gauge needles, which are the largest needles that are used.  I still, however, have the central line, which I was hoping to lose sometime this week, but with today being Friday, I don’t see it happening. 

The central line itself, is not working, and has become a bit of a nuisance.  The longer it sits in my chest, the better the chance that it can become infected.  I’ve had enough infection due to surgically implanted plastic tubes in the last two years, I really do not want any more.  The line is locked with heparin at some point during every treatment to keep it from clotting, but since it doesn’t work anymore, I think the action is moot.