written on June 24, 2014
I’m looking at the other patients around me in the dialysis center. Everyone is older than me. Several people are sleeping – for some reason, I just can’t seem to fall asleep sitting in the chair. I managed to do it one morning last week but it took me a long time to fall asleep and then I only slept about an hour.
The ones who aren’t sleeping are either reading things on their smart phones or watching television (everyone gets a personal TV if they want to watch it). I’m the only person who brings a computer. I’m also the youngest person in this dialysis center apparently (not something I want to be known for). The doctor who came in on Friday morning gave me that little nugget of information.
A few of the other patients have the shakes in their legs – the restless leg syndrome that comes from dialysis. One of the few side effects that really gets you. I usually get it once I lie down at night. I’m not sure what causes it. It’s a very annoying thing though. Mine presents itself as Charlie horses starting to form in my calves – for those of you who know me from high school, remember that crazy neck thing I used to do (I still do it sometimes. Turns out it’s a mild form of Tourette’s Syndrome, just another example of me being screwed up somehow)? Well, before I would do the neck thing, I used to kick my calf muscles every time I walked. The feeling that made me want to kick my calves is the exact same feeling I get when laying down in bed at night. Some nights it’s pretty mild and after 10 or 15 minutes, I’ll get to sleep and it won’t bother me. Other nights, it feels like all I can do is toss and turn trying to kick out the uncomfortable-ness. That’s the thing – it’s not a painful thing, it’s just annoying and uncomfortable. Sometimes it doesn’t start until the middle of the night – usually if I have to get up to go to the bathroom. I think that’s even worse than having it start when I first lay down.
I’ve written an entire blog on the blood pressure issues I have from dialysis. Here’s the strangest part of that – my blood pressure is always high when I’m dialyzing. Like 150/100. Every single time I’m plugged into the machine. I don’t think that’s normal, but maybe it has to do with the machine cleaning out all my blood pressure meds. Something I’ll probably never figure out.
Looking around, I wonder if any of the other patients suffer from migraines like I do?
Can I tell you how much I hate migraines? I never really understood why the people I knew who had migraines suffered so much. I never grasped the concept of how painful a migraine is until I started suffering from them. If you’ve never had one, please hope you never do. It’s like someone pounding a nail into your head, repeatedly. The worst is when the pain starts to throb in rhythm with your heartbeat. That’s when you know your blood pressure is on the rise, because the throbbing pain gets worse and worse. And don’t think about sleeping through a migraine – if you manage to get to sleep, the migraine is infinitely worse when you wake up. Pray for pain medications that work.
Before I went into the hospital with renal failure, the headaches I was having every day were migraines and acetaminophen wouldn’t touch the pain. And I was taking a lot of acetaminophen. Every day. Now I’m on something called rizatriptan, which works wonders. Unfortunately it does take about 2 hours to start working, so if I take it too late into the pain, I still have to suffer. I also have a prescription for Oxycodone mixed with Percoset – although since that’s a narcotic, I hope I never have to take it. Apparently that can be habit-forming, but not in the way you think. If you use narcotics to treat migraines, your body will start to create headaches so you’ll take the medication. Rather than becoming addicted to the drug, you become addicted to the headaches. How crazy is that?
Another weird side effect I’ve had off and on is the loss of taste. Some days after I dialyze, food loses all it’s flavor. It was far more of an issue right after I started dialysis – it’s not so bad right now, thankfully. The worst part was that water always tasted “oily.” If you don’t know what that means, great. It’s really hard to describe. Just know it’s not fun at all. I seem to be tasting everything just fine right now. Here’s one of the stranger aspects of it – my olfactory nerves still work. Which means I can smell food just fine, my taste buds just don't taste it.
One nice side effect though is I make less urine than I did before. Don’t get me wrong, what’s left of my kidneys is still making urine and that's a good thing. But rather than having to go to the bathroom every 90 minutes to 2 hours, now I can usually wait about 4 hours between going. Sometimes there’s a lot of urine, and sometimes not much. I just read online last week that if I’m on hemodialysis for at least 6 months, apparently my kidneys will stop making urine completely. I don’t know if that’s the case on peritoneal dialysis or not, but if my wife is not approved as a donor, I guess I’ll find out.
It’s been difficult to get used to the new diet, the limited fluid intake, and all these other side effects I’ve mentioned. The diet isn’t so bad – I mostly just have to watch how much potassium I eat. And potassium is in everything – the foods I miss the most are oranges and orange juice, avocados, potatoes, even bananas. I really miss tomato based salsas and sauces (tomatoes by themselves are fine, but anytime you boil them or leech the water out of the tomato, all the potassium goes with the liquid). I also have to be careful how much phosphorus I eat – I don’t worry about it too much. The highest concentrations of phosphorus are in dairy products, and no one is ever going to make me stop eating cheese. I have a pill that’s supposed to help take phosphorus out of my stomach before it enters the blood stream, so I still eat a lot of macaroni and cheese.
Let’s not forget sodium intake – if I eat too much sodium, I’ll retain water like crazy. No more seasoning anything I eat with salt. Eating out becomes problematic because of it, since most restaurants use a lot of salt in their food. Probably to make you thirsty so you’ll spend money on beverages. Ha ha, jokes on them. I pretty much only drink water now. I can drink distilled alcohol, but beer and wine are out. Sometimes I’ll splurge on lemonade or cranberry or apple juice, but usually water wins out. I just have to limit how much fluid I consume in a day – too much and I retain the fluid, then my fluid balance gets messed up, my dry weight shifts and I end up taking too much off when I dialyze and I get a migraine. Fun, huh?
The last side effect I’ll mention is the fatigue. I’m tired a lot now. Some days I actually feel pretty good, and other than a spike in blood pressure, I do fine. But dialyzing at 5 am wipes me out on days I’m in the center. And our two kids don’t really allow me or my wife to get a lot of sleep, since neither one of them is sleeping through the night. Our son is suffering from night terrors and usually wakes up between 1:30 and 2 and won’t go back to sleep unless we put him in our bed or one of us lays down in bed with him. Neither my wife nor I sleep well in his bed, so one of us always ends up losing sleep to spend time with him. We just hope that one day he’ll grow out of this and sleep through the night again. Hopefully he’ll do it sometime in the next year. If we have to wait until he’s 5 or 6, it’s going to be a rough few years.
I realize that my life will never be the same as it was before I started dialysis. It’s kind of depressing when you think about it. The side effects I’m suffering from dialysis will probably never change while I’m on dialysis. These side effects however should go away once I get a transplant. But then I’ll suffer from all the side effects of all the wonderful drugs I’ll be on – for the first month after a transplant, I’ll be on like 20 different medications. My body is very sensitive to drugs, so if there are side effects of the drugs (which there will be), I’ll suffer from them. The worst part is knowing I’ll be gaining at least 20 pounds that I’ll never be able to get rid of. So right now I look really good – I’m skinny, my skin is relatively cleared up (I was breaking out like crazy when my body was trying to get rid of all the toxins the kidneys couldn’t get rid of) and if you saw me you probably wouldn’t think anything was wrong with me. But once I get a transplant, I have a feeling I’ll look bloated and sickly probably for the rest of my life. I guess I should live it up now – enjoy the power and beauty of your youth. Not that I’m young anymore, but at least I know I’ll probably never look this good again. It’s all a trade-off – I’d rather have a new kidney and know I don’t have to go to dialysis again. And maybe one day modern science will figure out a way to grow a kidney from my own cells and I’ll be able to stop taking the transplant drugs I’ll eventually be taking (assuming I find a living, or even deceased, donor).