written on June 19, 2014
I’ve decided to write a blog.
I guess it’s not really strange, considering how many people are already writing blogs. And truth is, blogging is something that should be right up my alley. I love to write, and writing about myself seems to be a favorite past time. Although recently neither one has been happening at all. We’re going on two years of not writing, which is some kind of record for me.
A lot has been going on in my life recently so it’s making me take a step back and kind of re-assess, and in the reassessment I’m finding it hard to motivate to write. I’m finding it hard to motivate to do anything actually. I’m on dialysis… because I’m in renal failure.
Forty years old, a wife and two kids, a house, a cat and two kidneys that are failing. Not where I expected to be at this age. I figured I could avoid serious health issues into my sixties at least. But for some unknown reason, that's not what life had in store for me.
The truth is it’s hard to feel the motivation to do anything when I feel like my whole world has shifted. My life is dependent on a machine now, a machine I have to visit twice a week. I’m thinking I should start going three times a week because I go on Tuesdays and Saturdays, and after my Saturday session I keep getting these killer migraines. I finally have some medication to help with those, but it still ruins my Saturdays.
When I say migraines ruin my Saturdays, they also ruin my Tuesdays, just not every Tuesday. They start in the middle of my head with an aching sort of pain, then the pain rises in intensity and moves behind my eyes and into my forehead. Sometimes it radiates into the top of my neck and causes a stiffness in my neck that nothing helps. I know they’re migraines because Tylenol won’t touch the pain (I can only take acetaminophen because the other pain meds you can buy over the counter, the NSAIDs like Advil, are bad for your kidneys when you have a kidney disease).
Migraines are new for me – they started the week before I went into the hospital with renal failure. I used to never understand why people who suffered from migraines were in such bad moods when they went through them – I figured if they were like regular headaches, then you could just suck it up and power through. Um, no. Clearly I had no idea what I was talking about. It is almost impossible to deal with the pain of a migraine. Now I know…
If I went on Fridays instead of Saturdays, or if I started going on Thursday in addition to Tuesday and Saturday, maybe the migraines would get better (meaning fewer of them). I think it has something to do with fluid imbalance; figuring out the amount of fluid to remove every session. Some weeks I retain more water than other weeks, but the dialysis techs always want to take off at least a full liter. It’s like they have a mandate that they can’t charge full price for the dialysis if they don’t take at least a liter. My kidneys still work though, which means I’m still making urine. And making urine means I’m able to remove some fluid myself. That doesn’t seem to matter to them.
Dialysis sessions are three hours long, which is a nice way to catch up on TV shows or movies. For some reason I find it difficult to sleep during dialysis – could be the room full of other people, could be the noise of all the dialysis machines beeping and breathing and the doorbell constantly ringing as people come in and go out. It’s a noisy place, with no privacy. I usually play games on my phone or watch Netflix on my computer. Not the most productive use of my time, but it does help the hours pass.
And I do whatever I do usually buried in two sweatshirts with three blankets on top of me; it’s cold in the dialysis room. Since I have poor kidney function, I don’t make a lot of red blood cells, which means my body has a hard time staying warm on its own. That’s another great side effect for me, especially me, who used to run so hot when I was younger.
I’m on hemodialysis, which means the machine removes the blood from my body, cleans it, and then puts it back. It doesn’t hurt – actually, you don’t feel anything at all. It’s kind of creepy when the tubes coming out of your catheter land on your bare arm or bare chest – they get really warm from the blood flowing through them.
Other than that, dialysis tends to make me feel better. Unfortunately I have a temporary catheter installed underneath my clavicle which runs into my heart. Called a perma-cath, it’s meant to be temporary until I either have an access installed in my arm, or another catheter placed in my abdomen. If I get the abdominal catheter installed, I’ll get to dialyze from home. But there’s been scheduling issues trying to get the surgery performed. And this week I’m supposed to hear if my wife will be accepted as a living donor – if she is, I might just see if I can stay on hemodialysis with the perma-cath until the transplant surgery. One less surgery for me, don’t you know.
I decided to take a disability leave from work, try to get my head around this whole thing. I find myself laughing about it a lot – it’s too hard to stop crying once you start. I’ve only had a couple of tear-filled breakdowns and I can say they aren’t very fun. I’m not sure if it’s a realization of my own mortality, or a fear of not knowing how long I’ll make it on dialysis, or a fear of not being able to get a new kidney. To some extent there’s some shame involved – I feel ashamed for having to live this way. I blame myself for my kidneys failing. My wife and kids shouldn’t have to live with their husband/father going through this. I know it’s not my fault – trust me, if it was my choice to have kidney failure, I would choose not to do it. And I highly recommend that everyone else change your lifestyle as necessary to never have to go through this. It’s not painful, it’s just time-consuming, and sometimes it is uncomfortable. But it does change your life – because you do have to watch what you eat and more importantly, what you drink. Beer and wine and caramel-colored sodas are officially off my drinking list for various reasons. Not that I was much of a beer or wine drinker, but sometimes it’s nice to toss back a glass after a long day of work. Now it’s water, all the time, but no more than 2 liters a day, because I could start to retain it.
And that’s where I’m at right now. Staying home from work every day, trying to figure something out. Hopefully writing about my life, and the unexpected things going on in my life, will help me sort things out. So that’s what my blog will be about – an unexpected life. My thoughts on the unexpected things that happen to me every day, coming to you live from the various corners of my mind….