I have friends who will occasionally complain about something, then quip “first-world problem,” or offer that as a reply on someone else’s conversation thread. Well sure, we live in the US, which is considered part of the first world (a bit bass-ackward, but that’s another post). We’re going to have first-world problems. People used to throw up the poor in India and southeast Asia, south America, to show just what poor looks like. Our homeless have better lives than those unfortunates, absolutely true. I live here. My problems are different. Maybe sometimes they do seem insignificant, but they’re mine, and they’re the ones closest to me.
I have Polycystic Kidney Disease. I’m not telling you this to make you feel sorry for me; I’m not interested in your pity, any more than you would be in mine. I’m only telling because this one isn’t obvious. I don’t look sick. I don’t sound sick. I get funny looks when I sit down to rest, people thinking “well, if she’d just lose a little weight,” and that’s true, to an extent. At least 30 pounds I can only lose by nephrectomy, and that won’t happen unless my quality of life is so severely impacted, removal will make it better. Or, if/when I reach a point of needing a transplant, and there’s not enough room for the replacement.
Wow, how horrible, you may be thinking. Well, yeah, it sucks. It’s what I have to deal with. Other people have other things to deal with. No, maybe they don’t have a future of dialysis looming over their heads, but maybe they have an uncertain future of possible institutionalization, or a known family history of cancer, making them high-risk, or their children or other family members have something major in their lives. These can be invisible, too, and can affect someone’s quality of life. Or maybe the worst thing someone has to deal with is deciding whether they can afford the used-gearhead-special Mustang, or if they should probably stick with the Sonata in working order. Everyone has something they’re dealing with, and that something is a big deal in that person’s life. As I say, one man’s hangnail is another man’s trauma. I don’t compare myself to other people, simply because I don’t know what they have going on.
So anyway, this PKD – what is it? It is a genetic disease that causes fluid-filled cysts to grow on your kidneys. Depending on where those cysts grow, they will affect the function of your kidneys. My function is impaired by these cysts. As an added bonus, I have cysts on other organs, too. Some have cysts on their skin – also an organ. Because of that, because of how commonly that happens, some (myself included) are considering this more systemic than just related to the kidneys. Liver cysts aren’t at all uncommon. They don’t often impair function of the liver, but they can be really uncomfortable. Generally, this genetic disease is inherited from parents. If it’s Autosomal Dominant – the one I have – only one parent needs to be affected. For Autosomal Recessive, both parents need to be carrying the gene. Typically. There are exceptions; it spontaneously appears in about 10 percent of the cases. I am one. To the best of our knowledge, neither parent has/had this.
By the time I was diagnosed, fitting within the expected time table, I’d already been dealing with other invisible issues, things I could not then, and will not now, share publicly. There are some things whose impact is more greatly felt in the response of others than from the disorder/disease/dysfunction itself. It was upsetting, and shocking, but I couldn’t afford to spend much time thinking about it, yet. I was planning a major move across the country. I learned from my mother to do what I can, while I can. Save money for a rainy day, yes, but spend some of it on a sunny one, too. I’d been anxious to move for over a decade by then, long before I could drive, and I finally had the opportunity. I wasn’t going to let something like this hold me back. I spent a wonderful ten years in my new home. There were things I learned about myself. My PKD also progressed. By the end of that first year, my blood pressure had spiked considerably. I don’t know how much was the disease itself, and how much was the dramatic change in altitude (higher than a mile), but what was just on the high side of normal in April was dangerously high in November. something had to be done about that.
Here’s another one that you should probably get all the facts on, first. PKD causes high blood pressure. I’ll say that again – PKD causes high blood pressure. Severity varies from case to case, but the very simple answer is our bodies are producing renin at a higher rate, and because function is impaired, it’s not getting flushed out. Renin is a hormone that is involved in controlling blood pressure and sodium and water in the body. Too much renin in the system will lead to hypertension. Untreated, mine is stroke-risk high. The only thing I can do about it is take medication. Changing diet will not make it go away. It can help reduce it, as can losing weight, but when my pressure first spiked, again, I was in the best shape of my life, and had been for years. That would be another thing to consider when talking to someone about a disease. Unless you’re a physician, or at least very up-to-date on research, maybe keep your healthy-living suggestions to a minimum, or even to yourself. Living a vegan life will not heal my kidneys, and my quality of life will drop, ‘cuz I *really* love bacon. Once in a while, of course – even low-sodium has too much sodium, and never mind the fact it’s almost nothing but fat – but I really do.
Well shoot, that just sucks. Yeah, it does. It’s what I have to deal with. You have something you keep to yourself, something that is making you miserable. Maybe you’re not saying anything because you don’t think anyone is interested, or because it might cost you your job, or at least a promotion. Putting this out here, so blatantly, I’m taking a terrific risk. I have friends on my Facebook page that are also co-workers. I choose co-worker friends carefully, picking people I feel I can trust. There are a lot of things that this can cause, a lot of complications and difficulties. Being held back, being pitied, well, that’s a couple of them right there. Everyone is dealing with something; this happens to be mine.
If you’re not particularly squeamish, and you’re really, really curious, I have a picture of polycystic kidneys that have been removed, with a combined weight of 16 lbs. Mine are estimated to be about twice that weight. But then, I’m not built to be a dancer – I’m built to be a weight-lifter. Or, to put it more colorfully, to pull the plow when the horse dies. But I digress…so unlike me.