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muskratio10 karma

That's awesome! You're a hero. My husband has a rare genetic kidney disease. Right now he's fine and living a perfectly normal life - he takes like three different pills every day before bed and has to see a nephrologist every year for a checkup, but otherwise it doesn't affect his daily life at all. However they told us that it's likely he'll need a new kidney some day.

Sorry if this has been asked before, but what made you decide to do this?

muskratio3 karma

Please don't be sorry for us! As far as we're concerned, this was a good outcome! When my husband first started peeing blood about 5 years ago and after over a week it was clearly not just a kidney stone, we spent ages worried sick that it'd be a much worse issue. He was in the hospital for 5 days while they biopsied and ran tests and brought in specialists trying to figure out what was wrong. The fact that the diagnosis came relatively swiftly for such a rare disease, and that the prognosis is as good as it is, was nothing but positive for us! We will cross the kidney transplant bridge when we come to it, but in the meantime we were told it would probably be at least 30 years out and probably more. Of course I wish it weren't a thing at all, but we are also lucky to be set up reasonably well financially, and many many people have been in far worse situations. At least we have time to plan and enjoy our relative youth! :)

You sound like a paragon of virtue, and I mean that with absolute honesty. I've tried to give blood several times, but they always turned me away on the basis that I was underweight. I used to volunteer at an animal shelter, but that was years ago and otherwise I feel I've been negligent on the front of community service. I'm not sure what I can do with this stupid plague and all, but you've inspired me to look into it.

Thank you for your response!

muskratio1 karma

Do you have a link to the video you watched? I'm already a registered organ donor and have honestly never even had to think about it, but it's still a subject that interests me. I get why some people are queasy about it and I want to understand all viewpoints.

muskratio1 karma

Thank you! All things considered we're making out pretty well. My husband has an unusual form of IgA Nephropathy, which presented very strangely to start as well, and that caused us additional problems at the start. All things considered we are very lucky, though. We aren't rich but we're reasonably well set up financially. His current prognosis is very good, even for his diagnosis (which, all things considered, could be a lot worse). It could be much worse.

Things are always improving! The rate at which technology is thundering forward is astonishing. And I wish you all the best, truly. I'm not a psychiatrist and although I work in cancer research I'm certainly not an expert on kidney issues, but if you ever need to just talk to someone who won't judge for a bit I'd be happy to do that. Just send me an IM or a PM - I'm good at listening and I don't care if you do it now or five years from now or never.

muskratio1 karma

Get a hobby! One you actually enjoy, and can be social with (doesn't have to be something always done with a group, just has to be something you can talk about with other people who enjoy it, but if it's something that can be done with multiple people that's a bonus). Don't be afraid to try a bunch of things out. Sports count. Video games, unfortunately and as much as I love them, usually don't. I mean if you're going out to tournaments or clubs or something then sure! But if you're sitting on your couch playing them by yourself, no.

I'm serious, this is the most important thing. If you're not an interesting person it's hard for someone to be interested in you. Being an interesting person often just means having things to talk about! And hobbies are a great way to meet people. Don't go out with the expectation that you're looking for a girlfriend and that's your only goal. That makes you seem desperate. Just talk to people, get to know them. And more importantly, listen to people.