I was obviously retaining fluid and the only reason I knew that was I popped buttons off my pants so I have a very conscious memory of being… “Awesome I’m finally putting on weight” because I was a scrawny little 18-year-old. And that was it. Changed pants and went to school. My buddies looked at me, stuffed me in the car, threw me into [the emergency room] and said check this guy out there’s something wrong.
They did a urine test and a blood test and they’re like… your kidneys have stopped working. My sight failed around the time of dialysis. And so I had two issues to deal with. And once I was taking dialysis I had to do eye surgery. So that was a lot of scary things. I did three surgeries then. And so I gave up a lot of things I used to do. I’ve known since day one that I was going to be on dialysis. I was born with a quarter of one kidney, which then I lost when I was about 19. I still did all the normal stuff like I rode my dirt bike, I’ve done crazy stuff on my four-wheelers, but I just always had that at the back of my mind that I had to be careful because you know. You never know. I was the one that discovered it, yes. I saw that I had plus three protein in my urine in my microbiology class.
I knew that wasn’t normal so I went to my family doctor, then my family doctor referred me to my nephrologist and so at the ripe old age of 22 I realized that my one kidney wasn’t going to last me. [Ontario Renal NetworkPatient Experience Video series:Dialysis Treatments] [Mike M, Nocturnal Home Hemodialysis]It wasn’t until I graduated from university that I knew dialysis was my only choice. And it very quickly became apparent that dialyzing in my house and giving me freedom from my schedule was really important. And that meant doing dialysis overnight while I was sleeping. And I’ve been on home nocturnal for about 14 or 15 years. The concept of sleeping with this machine and needles in my arm was kind of freaking me out a bit. Like at some point the scales tipped in favour of… we’ll deal with that as long as it means I can do more stuff in the evenings.
For me the bigger part about of having dialysis in the house is the logistics so dealing with the inventory control on your supplies, the delivery, the maintenance. The maintenance guys work 9 to 5 and so do I so I always have to take some time off work to let them in the house. They’re people I known for 20-25 years so a lot of times they come first thing in the morning, I let them in, I go to work, they lock up when they’re done. There’s a lot of heavy boxed so having a wife that does weight lifting training helps. I was very conscious of not unloading the entire responsibility of caring for me for the part I can’t do onto heather alone.
I probably had about 15 or 20 people that I could call at any time to help facilitate dialysis that didn’t involve heather and heather was free to do her thing. People get sort of in this mindset that this is an all-or-nothing thing like its dialysis first and everything else is secondary. And my view is everything else is first and dialysis just facilitates that. And that’s how I’ve viewed the positivity of home dialysis. [Harry J, In-Centre Hemodialysis]I had no other choice but to choose Hemo. In-center because I’m legally blind. I can’t see to do the PD or in the home Hemo. One of my biggest issues when I started dialysis was transportation. From the center for dialysis the normal drive time is twelve to fourteen minutes, and I take a wheel trans… [It takes] me an hour and a half to three hours go home. There are moments when I find myself feeling depressed.
And I think its because some days you go in there and you have a hard time with dialysis, the needling was very difficult for me. Sometimes low blood pressure, or sometimes the machine will beep 20 times for a treatment all these things affect you. One way or another. And sometimes it becomes like a Burdon. And you have to do it because you want to stay alive. But sometimes its overwhelming. And the things I did to take off the pressure from me is I start to interact… I took a leading roll interacting with all the patients there. I didn’t give up my sense of humour, I didn’t give up the will to live. I didn’t give up my idea of helping people because of the illness that I have. I didn’t give up seeing my grandkids, talking to my sons. [Carol S, Peritoneal Dialysis]I chose peritoneal dialysis because at the time the region that I live in did not have home Hemo, and I really wanted something that allowed me to do it at home. I didn’t want to go into the hospital and spend several hours on a machine. My kids were young. So I wanted it to be something that I could incorporate into my life.
You know it also came with a few dietary and fluid freedoms. That hemodialysis didn’t give me. And I did the exchanges at first but you have a restriction with lifting. That was a little bit of a challenge for me because I would sometimes lift my daughters into their car seats. After a couple of months, I ended up on the night cycler. It felt like it was less invasive of my day to day life. Fatigue was a huge thing. I’d go to bed and I would sleep and I would feel like I haven’t slept. And I’m a high energy person, I like to do stuff so I made myself do it. But I didn’t feel like doing it. I think at first I had the mentality of doctors need to do this. The nurses need to do this for me, and when I realized there are people out there that are doing it for themselves I can do it too.[Mike S, In-Centre Hemodialysis]I went with Hemo dialysis only because I was not eligible for peritoneal because I’ve had too many abdominal surgeries. And I’ve also gone with a catheter because my fistula clotted trying to save my kidney and I’m not eligible for another fistula now. I’m trying to hang out with this as long as I can. When I go in in the morning I’ll sit in the waiting room and I’ll talk to people in the waiting room and there’s actually an older gentleman who tells me jokes in the morning before I go in. And he tells me the same joke every time.
Which is hilarious. Sometimes after dialysis my motor skills are really bad and I’m slurring my words, I’m kind of off-balance, and I don’t feel good. Those days really suck but other than that I usually go to work after dialysis. I get to see a doctor every Tuesday and Thursday which is really nice so if I have any issues at all there’s also dietitians right there at your fingertips all the time. If you have any questions about anything I don’t have to call and make an appointment because I’m already there. Leaving the machine is at the hospital is kind of like ok when I’m at the hospital I deal with that and when I go home I’m just a regular guy. That’s it. I try to keep it to the back. Like I said… I don’t let it run my life. As long as its back there and I am paying attention then its ok as long as… because once it starts getting ahead of me I’m in trouble. Its all in what fits your lifestyle. [Ontario Renal Network logo]