I guess I’ve been doing hemodialysis for a little over two months now, which seems like a drop in the bucket for some folks who’ve been going through these motions for years and years. I try to say that it’s not that bad because I’m surrounded with so many examples of people who have it worse. Granted, a lot of them are older than me, but every treatment day I see people in wheelchairs and people struggling just to remain conscious during their sessions, freezing under piles of blankets whereas I sweat like crazy and spend my four-hour stretches working or writing or just entertaining myself on my phone…
…yet I can’t deny that it’s affecting me, too.
After my sessions I’m pretty tired. Sometimes I make it until bedtime and can pass the time playing video games or watching something with the kids, and sometimes I tap out early.
My off days are typically pretty good, except that I get winded so damn easily now – literally bending down to pickup clothes for laundry or putting away dishes will require breaks in order to finish the job! From what I can tell, this is mostly due to my ginormous kidneys limiting the amount that my lungs can expand in my body, which is a really weird problem to have, knowing that at this point no amount of exercise can help to improve it.
Hell, I don’t even really know how overweight I am anymore because so much of my gut is taken up by kidneys!
On that front, I’m still sort of hoping that they’ll take the bad ones out at the same time they’re putting my transplant in, but it’s really up to the surgeons and apparently they prefer not to if they can help it, so we’ll see what happens there.
In other news, I spent a week in the hospital recently because somehow I managed to get sepsis. We’re still not really sure how/where it came from because they took a few cultures that all came back negative, but they removed my old PD catheter as a precaution while I was there and gave me a ton of IV antibiotics, so I’m mostly feeling better from that angle now.
Going through it, I honestly didn’t realize how dangerous sepsis can be – particularly for somebody like me with kidney issues … apparently between that and being on dialysis already, we were really lucky to catch it as early as we did. Left on my own, I thought it was just a bad cold or something because it kind of came out of nowhere – I was working on Friday afternoon and suddenly started getting chills and feeling lightheaded, so I went to lay down for a bit. I tried to get up a few times on Saturday, but would make it like 20 minutes on the couch before heading back to bed.
Sara said that I also seemed to be staring off into space or having trouble sounding coherent, so late that night we finally went to the ER where they ran a ton of tests, gave me dialysis because I had been too sick to go for my session that day, and then ultimately admitted me to a room for the next six days.
I started feeling “better” maybe 2 – 3 days in, but they kept me for tests and surgery for a few more.
That was maybe two weeks ago, and I’m done with my antibiotics, though I’ve read that sepsis can take a while to fully go away. I mostly feel better, but again, I’m starting to acknowledge how my better has definitely receded from even where it was a month or two ago. Case in point – we’re taking the kids to Legoland on Thursday with our homeschooling group and for my first time ever, I’m renting a scooter to help me get around the park.
I’m not super happy about it, but knowing how a trip to the grocery store can put me out of breath, I’d rather be safe than sprawled out somewhere in the middle of Mini-Land, sending everyone into a panic instead of being able to enjoy their day. I don’t really plan on going on any rides anyways, but watching them is half the fun at this point and it’s been so long since we’ve been that I know they’re all extra excited to go again!
Admittedly a lot of my life right now is hurry up and wait because I’m hoping to do my transplant sometime in May, so in the meantime weeks go by three dialysis sessions at a time and I’m just doing my best to have a few other things to show for it before we take on that new challenge that will no doubt dominate my life for at least a few months to follow.
The other night I was talking to the kids about everything. I try to be as honest with them as I can about my disease without letting it get too scary, but we were talking about whether they’re going to get it, too, and Matthew asked if he had to have surgery, “Could I tell the doctor to make the cut small in his belly because he doesn’t like cuts?” and it was so hard to fight back the tears and try to reassure him that hopefully they won’t have to deal with it at all … but that right now they’re still way to young to have any idea whether it will present itself or not.
It didn’t really present itself to me until my mid-30s and for a few years it was just high blood pressure warnings, then the last couple of years it went crazy and here we are. It’s not something that kids should even have to think about, yet they’re already seeing me doing dialysis each week and know that they don’t want to go through that themselves. I think deep down in their own ways, they sort of get how dangerous it all is, which pains me because kids at that age should be able to think that their parents are invincible.
The best I can do is keep my head up and let them watch me beat this thing to give them back some of the hope that having a disabled father has robbed them of, which is no easy task. But nobody ever said parenting was easy, anyways…