Confirmations of jokes

Yesterday I got confirmation of something that, while I knew - knew enough to have comfortably joked about it for two years now - I'd still not entirely dealt with. In my nephrologist's office yesterday, I half-joked "So, I figure I'll be on dialysis eventually. Like, it's inevitable at this point, right?"

It was met with a somewhat sad smile. The nurse practitioner nodded and replied "With patients like this...with cases like this...it's extremely likely you'll be on dialysis. Right now, though, the point is to put it off as long as possible."

I mean, I knew that. I really did. I wouldn't have been joking about it so frequently if I didn't. It was still a blow to hear it directly.

Right now my kidney functions are hovering around 40%. That's a drastic drop over the last year from the roughly 70% it had peaked at. My nephrologist mentioned that my kidneys have since developed scar tissue (how? I don't get that. It's not like I'm sitting there carving my kidneys up from the inside out? I don't understand how they develop "scar tissue"?) and that will place fixed limits on further healing. While I'm managing to keep up enough to stay out of the hospital, the time for miraculous recovery, for last minute Hail-Mary's, has passed.

All bodies eventually deteriorate. Hell, that's what aging is - an inevitable deterioration. No one gets a reprieve from that. I'm not that special. Still, it's one thing to know that. Another to see it in the numbers, month by month. The fact that I see my specialist every month says something about the severity of my health, since seeing a specialist more than once a year in America is like pulling non-existent teeth.

All of this, oddly, during a time when I feel relatively healthy, too. The human body is so strange. I feel fine, or at least finer than I've felt in years past. But the labs, month by month, don't lie and the truth is that I'm on a slow decline. One that I can do very little about.

The specifics confuse me. My iron levels are too high while my red blood cell counts are too low. My phosphate levels climb regardless of diet and medication while my protein levels drop to alarmingly low levels. My blood pressure soars while my magnesium levels fall. I dehydrate easily while also needing to be on diuretics, lest I develop fluid around my heart. It's all so on-one-hand-and-then-on-the-other.

I suppose it doesn't matter much in the end, so long as I take my medications and do what I can to follow a healthy diet. What will be will be. It's just that it will be dialysis - and that's frightening.

I came home yesterday and told Jesse that there were two questions on my mind, one of which was ridiculous, but present nonetheless. "Will I get fat?" I asked. "Because I don't want to get fat." What a RIDICULOUS thing to worry about, right? And yet, there it is.

That was followed by another question, the real question, the one that I'm not sure can actually be answered. "If I'm on dialysis, does that mean I won't be independent anymore?" I don't know a damn thing about dialysis except that it's spending roughly 15 hours a week hooked up to a massive machine or else you'll die. Quickly. Painfully. That means a great deal of things, such as travel, will forever be out of the question, unless I am near a metro area with a hospital where I can get dialysis.

Not that I wanted to go backpacking through Europe or anything. My idea of a great vacation is Disneyworld. But the option for slumming it through the Swiss Alps would be removed and that grieves me.

What if something happens to Jesse and I find myself living alone? Can a person be alone and do dialysis AND keep up on running a household? Will I need closer care than I already have? Will I be able to care for myself? Will I be sicker, day to day, and lose even more ability to do things like clean house and run errands? What responsibilities will be added to Jesse's care of me?

Lots of these questions could probably be fielded with a quick Google search. I'll do so eventually, but me being me, I'll have to work up the courage.

I try to not get too worked up. After all, I'm not actually ON dialysis yet, so spinning my wheels about how tragic my life will become (or at least, how tragic I'll feel it's become) will do no good. But it's no longer a theoretical and for that, I think about it.

This entry was originally posted at https://quirkytizzy.dreamwidth.org/1117080.html
30% in functionality drop - well, that's a chunk...
I have no idea if that's an average number for lupus - you know, as with such auto-immune based diseases it's a very strong question of how active it is in each person's body itself. I imagine It can strongly differ...
What I think I get in this context is why people like Selena Gomez, who has been diagnosed with lupus too, needed a new kidney in the middle of their 20s already.
Even assuming someone walks around with this disease going on in his body in his youth, and it remains untreated, this is a pretty drastic loss in body functionality.

I can imagine the many weird side effects that you experience result, on one hand, from the meds that you take, on the other, at the same time, from the function loss that your kidneys experience. Partly this can be involved with the liver too (the interplay of both with each other, I mean).
At least, as far as I know, problems with water in the body can also result from a liver who can't live up to all tasks anymore that one passes on to it.
As you're an aging addict, and organs like the liver never forget this overworking, this may interact unfavorably with your damaged kidneys...
...Not wanting to scare you, though.
It's oddly comforting to hear someone else state the obvious - that is a drastic drop and that it will affect my life in drastic ways. At least, it's comforting when a friend says that. It's scary when a doctor says that. What an odd difference.

Well, I don't know how her disease process was over the years - since when she knows anyway that it's lupus -, but, knowing what it is as systematics, it still is quite a chunk. And she sure wouldn't have received a transplant if it wouldn't have been necessary (you know, just because she's person who owns enough money).
Btw, speaks a lot why that hanging around with J. Bieber couldn't take place in her life anymore - he drinks and does shit whenever he wants, she can't do anymore unless she wants to be dead at 30 obviously.

It might be it plays a very important role with this disease what it starts to develop the destructive processes against first. Another case of a famous person is singer Seal - can't recall to have ever heard him or others speak about heavier consequences of lupus on this health (well, doesn't mean they don't exist, right?). The only very obvious sign of the disease that he carries around is the scars in his face - so he might be rather a type to have developed skin problems before other problems.
As him being much older, might be that the disease eventually also broke out at a much higher age, but still it seems like he's doing fine enough with it.
Seemingly, that's the "luck" of that disease... The playing roulette that it is.
The National Kidney Foundation has some great info on dialysis: https://www.kidney.org/atoz/atozTopic_Dialysis.

You might also want to check out Wikipedia: https://en.wikipedia.org/wiki/Dialysis

And WebMD: https://www.webmd.com/a-to-z-guides/kidney-dialysis#1-3

Ultimately, you and your nephrologist will have to work together to determine what type of dialysis will work best for you and whether you can do it yourself at home or it needs to be done by professionals.
yeah, 15 hours a week sounds like a lot...my friends dad is like 90, I was under the impression its something he just goes and gets done like twice a week
Since entering my 40s, I kinda know what you're probably feeling. I've been dealing with some breathing problems, I have sleep apnea, and my knees are destroying themselves. While I do have a cpap machine to deal with the sleep apnea, the other two are worrying at times. Sleep apnea can be fatal. So can suddenly not being able to breathe, or falling down the stairs if my knees give out. Some days, I can't walk across a room without pain. I worry a bit, because I live alone, and if something would happen...would anyone know?