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I need a kidney!
I rarely post on social media, and even less often do I talk about my health, but I’ve been faring worse lately and I realize some of my friends might want to know about it.
The tl;dr version for those unaware, or short on time, is that I’m in end-stage kidney failure, I’m really feeling it now, and if I don’t get a donor kidney relatively soon things are going to get ugly.
The truth is I’ve been exceptionally lucky for someone with kidney failure; it’s been very gradual, I’ve otherwise had no real health issues, and I haven’t had serious symptoms (outside of anemia) for far longer than most patients. But now that I’m down to about 10% kidney function, the toxins are simply starting to build up in my body faster than it can handle them.
One major result is impaired mental function. My ability to focus, memory retention, and motivation have all been seriously reduced; it’s a struggle every day to function adequately at work, and my creative output on my own time has dropped to almost nil in the last 6 months.
I’m easily exhausted, with less stamina for exercise and crashing hours earlier than I used to; it doesn’t help that I’ve been sleeping worse, awakened by charley horses and vertigo. And in the last couple weeks I’ve begun having sharp intestinal cramps almost all the time, to add to my increasingly unpredictable/unpleasant digestive system woes. As all of you who have/are also living with chronic pain already know, that is not just exhausting but corrosive to your psyche and emotional health.
(I suspect my being reflexively upbeat and pretty laid back obscures a lot of this; people who interact with me almost daily are still startled when I disclose my situation to them. But the casual question “how are you?” has gotten harder and harder for me, torn between the cultural reflex not to be a downer or seek attention, and an instinct to at least not blatantly lie to people. However, “sort of awful” is not a very good casual reply to a co-worker or passing acquaintance.)
Anyway, the endgame on all this is either dialysis, or a transplant. The former is a regular 4-hour treatment to filter my blood, and according to my medical team this will be exhausting and put a lot of stress on my other organs, esp. my heart. Life expectancy relying on dialysis is about 5-10 years, though I suppose my chances are better given my age, etc. But I don’t know if I’ll be able to work while on it; even being reduced to working part time is a little scary, financially.
Getting a new kidney has some drawbacks too (like being immune-compromised) but after the recovery time I would in theory return to entirely normal health. I’ve been on a transplant waiting list for 2.5 years now, and my nurse always encourages me by saying how every kidney transplant patient she’s had always says after their surgery that they never thought they could have so much energy. It’s a really nice thought. But on a waiting list, you never know just how long you have to go; statistically, I still have a couple more years.
I have had a few people very generously investigate the possibility of being my donor. I’m profoundly grateful to them, but so far it hasn’t worked out for one reason or another. If that is something you think you might contemplate, or are even curious what is involved, let me know and I can put you in touch with someone who can answer your questions. (Prospective donors have to be evaluated independently from the team in charge of my case, so I won't know the details beyond that unless you disclose them.)
If you’re the praying type, I wouldn’t mind some prayers said about this, and for that matter for Kellyann as well, for whom I think the extreme anxiety of this whole situation is sometimes as bad as what I’m dealing with.
But mainly, I just want to let people know what I’m dealing with. If you actually read all this, bless you. Thank you for being my friend. And finally, because this has all been sorta heavy, here's something to lighten the mood:
The tl;dr version for those unaware, or short on time, is that I’m in end-stage kidney failure, I’m really feeling it now, and if I don’t get a donor kidney relatively soon things are going to get ugly.
The truth is I’ve been exceptionally lucky for someone with kidney failure; it’s been very gradual, I’ve otherwise had no real health issues, and I haven’t had serious symptoms (outside of anemia) for far longer than most patients. But now that I’m down to about 10% kidney function, the toxins are simply starting to build up in my body faster than it can handle them.
One major result is impaired mental function. My ability to focus, memory retention, and motivation have all been seriously reduced; it’s a struggle every day to function adequately at work, and my creative output on my own time has dropped to almost nil in the last 6 months.
I’m easily exhausted, with less stamina for exercise and crashing hours earlier than I used to; it doesn’t help that I’ve been sleeping worse, awakened by charley horses and vertigo. And in the last couple weeks I’ve begun having sharp intestinal cramps almost all the time, to add to my increasingly unpredictable/unpleasant digestive system woes. As all of you who have/are also living with chronic pain already know, that is not just exhausting but corrosive to your psyche and emotional health.
(I suspect my being reflexively upbeat and pretty laid back obscures a lot of this; people who interact with me almost daily are still startled when I disclose my situation to them. But the casual question “how are you?” has gotten harder and harder for me, torn between the cultural reflex not to be a downer or seek attention, and an instinct to at least not blatantly lie to people. However, “sort of awful” is not a very good casual reply to a co-worker or passing acquaintance.)
Anyway, the endgame on all this is either dialysis, or a transplant. The former is a regular 4-hour treatment to filter my blood, and according to my medical team this will be exhausting and put a lot of stress on my other organs, esp. my heart. Life expectancy relying on dialysis is about 5-10 years, though I suppose my chances are better given my age, etc. But I don’t know if I’ll be able to work while on it; even being reduced to working part time is a little scary, financially.
Getting a new kidney has some drawbacks too (like being immune-compromised) but after the recovery time I would in theory return to entirely normal health. I’ve been on a transplant waiting list for 2.5 years now, and my nurse always encourages me by saying how every kidney transplant patient she’s had always says after their surgery that they never thought they could have so much energy. It’s a really nice thought. But on a waiting list, you never know just how long you have to go; statistically, I still have a couple more years.
I have had a few people very generously investigate the possibility of being my donor. I’m profoundly grateful to them, but so far it hasn’t worked out for one reason or another. If that is something you think you might contemplate, or are even curious what is involved, let me know and I can put you in touch with someone who can answer your questions. (Prospective donors have to be evaluated independently from the team in charge of my case, so I won't know the details beyond that unless you disclose them.)
If you’re the praying type, I wouldn’t mind some prayers said about this, and for that matter for Kellyann as well, for whom I think the extreme anxiety of this whole situation is sometimes as bad as what I’m dealing with.
But mainly, I just want to let people know what I’m dealing with. If you actually read all this, bless you. Thank you for being my friend. And finally, because this has all been sorta heavy, here's something to lighten the mood: