So, last week I was on dialysis training, and now it’s the weekend. On friday, my dialysis supplies were delivered and my cycler machine was set up in my bedroom.

The nice guys who delivered my supplies carried them into my office for me, as I specified. And damn, did they deliver a lot of stuff.

The initial order was put in by the nurses, and they are teaching me how to submit follow-up orders myself. I’m using a lot of google calendar. And there is so much stuff that it’s overwhelming, but luckily my wife is good at organizing stuff. While we were in the hospital being taught, she was making lists and ordering shit on Amazon. We stopped by a dollar store for some organizational compartments for drawers, and now my bed’s end-table is very well organized.

So last week, I spent four days of the work week at the hospital taking a course on Peritoneal Dialysis. Yeah, fun. Want to spend days in a hospital that is a major pain to reach due to horrible traffic and lack of urban planning, where they surgically modify your body and then teach you how to live with those modifications. Sound fun?

The people were…awesome. The nurses, orderlies, and the doctors could not have been better in how I was treated. How we were treated, actually, since my amazing wife came with me. I mean, day one is scary enough, since they are planning to cut you open and pull out the PD catheter so you can use it. They’re going to use local anesthesia, but I’m always worried that it’s going to hurt anyway.

I’m surprised that it took this long. I’ve had the website up for a while now, and I just appeared in Glen Gower’s newsletter. He’s our local city councillor, and was kind enough to give me a few minutes of his time recently.

But not everyone is quite so altruistic. I just received an email from a “woman” (who knows?) asking if I am looking for a kidney, when obviously I am. I pointed her at the Ottawa Hospital living donor program, and then did a quick search on her email address out of curiosity.

So, I just had a regular check-up with the CKD clinic. Sadly my kidney function is now 9%. Yes, single digits.

The nephrologist said that it’s important to find the “sweet spot” to start dialysis, between being strong enough to learn how, but close enough to really need it. And she felt that this is that time, so I am now signed up for a 4-day peritoneal dialysis course in about 2 weeks.

Usually when it comes to government you can pretty much guarantee that if there is a “right way” to do something, it is probably not being done by your government, either through incompetence or corruption. Sad but true. And when they want to change, it is usually a slow, painful process that is far more costly than it should be.

But now and then, a government gets something right. For example, in Singapore, organ donation is opt-out, not opt-in, like it should be. Here, Check it out.

So, it would seem that my hoping, and occasional praying, for my condition to turn around was, admittedly, a waste of time. Not really a surprise.

I was supposed to go to the course on Peritoneal Dialysis this month, but given that my symptoms are not quite where the CKD clinic expects them to be, they suggested that we wait until my assessment early next month to make a decision. There is a very good chance that at the end of that I’ll be signed up for the course immediately.

So, I just had my July appointment with the Kidney Clinic at the Riverside. I always dread those. They’re never good news. I mean, don’t get me wrong, the people at the Riverside Hospital are great, but they simply have no good news to give me, and they’re not about to downplay the seriousness of my situation.

Well, as usual, it got more serious. My eGFR was at 13 months ago. Now it’s 10. Is that a temporary drop? Not sure, I’ll find out in a month when I repeat the testing. They want to see me again in six weeks, so, y’know, that ain’t good.

So, I asked an old curling buddy (yes, those exist) about his experiences with kidney disease. He’s farther along than I am, having just had a transplant (yay!), so clearly I can learn from his experience.

He has gratiously permitted me to post this. I quote:

Hi Mike and Maria,

Feel free to use anything I’ve written in your blog posts or on Facebook. All dates are rough, I am using My chart, but some of the data is really buried and there isn’t a really good search engine on Mychart.

I just came across this story from the Sudbury.com news.

I like the ‘Vette.

The car show featured premium cars as well as live music, an ice cream truck, food vendors and a kid zone. Given the name, the event also featured a booth where people could sign up to be organ donors.

And I love that. Nicely done people.

So, last Wednesday I dropped by the Riverside Campus of the Ottawa Hospital at the crack of dawn to have Peritoneal Dialysis Catheters surgically implanted in my body. Y’know, I could have just stayed home and worked remotely, but I thought it would be fun to get some good drugs and have some holes cut into me.

Seriously though, my kidney function is dropping (somewhere around an eGFR of 15 and on the way down) and my doctors think it’s a good idea to prepare. I really can’t argue, even though I have been dreading being at this point from about 2008 onwards. Side note: I have learned from experience that sticking my head in the sand and hoping that a medical condition will simply go away does not work. Who knew?