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Old 02-13-2015, 12:38 PM  
Fire Me Boy! Fire Me Boy! is offline
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Who's got two thumbs and no working kidneys?


So some of you know, most of you do not, last April I went into renal failure. I've been doing dialysis since then, first hemo three times a week, and now peritoneal while I sleep.

A week from today, I go to Atlanta to go through a full evaluation for kidney transplant – tests I’ll repeat in Birmingham in June – to determine if I’m a viable candidate. Even if I get on the list, it’s a long road ahead. I'll be honest: I'm more than a little concerned that I won't be approved.

So if you can spare a prayer to whatever higher being to which you subscribe, good vibes, or thoughts, I’d appreciate it.
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Old 06-11-2015, 01:23 PM   #181
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Old 06-11-2015, 01:30 PM   #182
BigMeatballDave BigMeatballDave is offline
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Originally Posted by Fire Me Boy! View Post
Sorry, folks. Born in 1978. Yes, I'm very much not a typical kidney patient. Dialysis sucks, but it's better than my alternative.
How often do you need dialysis?
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Old 06-11-2015, 01:35 PM   #183
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How often do you need dialysis?
I do peritoneal, so every night. 10 hours.

If I did hemo, it would be 4 hours, three times a week.

But hemo sucks ass, big time. Travel is much more difficult (and I still work, and travel for my job), but the physical effects are worse. I'd do a round of hemo and would feel exhausted for 24 hours, was usually kind of achy from it. And dietary restrictions are tougher.
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Old 06-11-2015, 03:35 PM   #184
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I do peritoneal, so every night. 10 hours.

If I did hemo, it would be 4 hours, three times a week.

But hemo sucks ass, big time. Travel is much more difficult (and I still work, and travel for my job), but the physical effects are worse. I'd do a round of hemo and would feel exhausted for 24 hours, was usually kind of achy from it. And dietary restrictions are tougher.
JFC All of this would suck a giant one.
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Old 06-11-2015, 04:20 PM   #185
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JFC All of this would suck a giant one.
Hence my zero star rating.

I mean, really... you get used to it. I've been doing PD since July of last year, and dialysis since April of last year. It pretty quickly just becomes part of your life. Mainly affects your social life.

My work had a "family night" Tuesday at the minor league baseball game. It's usually on a Friday; since it was on Tuesday, I couldn't go. If I get on my treatment late, I still have to get my 10 hours, so that means I get off late. I usually start getting hooked up around 7:30 p.m. every night, which means I get off around 5:45 a.m. the next morning. If I don't get on until 10 p.m., that means I can't get off until 8 a.m. And I still have to do my morning routine to get ready for work.

I have family coming down in July. That's going to suck, having to leave them in the living room while I go sit by myself in the bedroom.

Anything I do that gets me out of my schedule, I pay for the next morning. And I typically would rather spend time at night lying around vs. lying around in the morning. I'm an early riser, and once I'm awake, I want to get up get going.

But there are some benefits. I get to read more; and because I'm tied to my bedroom for 10+ hours a day, we upgraded the TV (actually, moved the living room TV to the bedroom and upgraded the living room TV). I have doctor and a nurse ready and willing to see me at a moment's notice, for anything. I'm on Medicare now, so anything my primary insurance doesn't cover, Medicare picks up.
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Old 06-11-2015, 07:30 PM   #186
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So your on dialysis while you sleep, you plug in and go to bed?
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Old 06-11-2015, 07:33 PM   #187
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So your on dialysis while you sleep, you plug in and go to bed?

Basically. I usually plug in around 7:30, go to sleep around 10, wake up at 5. Unplug around 5:30.
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Old 11-13-2015, 02:00 PM   #188
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Hey everyone. I initially wrote this after a discussion on dialysis tech (this new belt-style 24-hour dialysis device) and donors. I was going to post on Facebook but chickened out. I can't really explain. But I feel somewhat compelled, so if you take the time to read it, thanks. It's kind of stream of consciousness, so sorry for the wall of text.

Quote:
Anything that can improve the process is needed. I have a perspective that I think most don’t know, and I want to take the opportunity to maybe help illustrate for some of you willing to read this whole post why we need to do more. This isn’t a pity party. Don't pity me. Dialysis sucks, and it's not just the time commitment. There's emotional stress, physical stress, even social ramifications - not just on the patient, but on family, too. One in 10 people in the U.S. has some type of kidney disease; some 400K on dialysis, 100K + in the U.S. alone on the kidney transplant list, but only 20K donors. The math doesn't work, never will. We need better technologies. One day we’ll have 3D printed kidneys from our own tissue, but until then, we need more people willing to be donors. I'm one of the lucky ones. I've got an incredible wife who actively wants to give me a kidney. I'm genuinely astounded at her generosity. I had two close friends offer one of theirs. That kind of support is overwhelming, and I don’t think I can adequately explain how much the offer means. It's on me now to lose the weight I need to lose. For three months I did hemo, three times a week for 3-4 hours at a time. I took a laptop or my iPad and worked to pass time. I saw people – young and old – come in, do their time in relative misery and leave, just to come back in 2 days and do it again. I saw a young woman, 25 at most, who was back on dialysis after her body rejected her third kidney. She’d been on and off dialysis since she was 9. I can't imagine. I hated hemo. Every second of it. It was sometimes painful. It was always exhausting. About the time I would recover from a session, I had to do another. I switched to peritoneal dialysis (PD) in July 2014; it would allow me more freedom, they said. It wouldn’t make me feel tired. I wouldn’t have as many dietary restrictions. I’d be more in control of my own healthcare. It was the right move for me, I don’t regret doing it. I still work, and I travel. And PD is about 100x better than hemo, at least for me. But my reality is I go to my bedroom around 7:30 p.m. every night to get hooked up to a machine. I have a 12-foot tube that goes from my access port to the dialysis machine, and for the next 10 hours, I’m tethered. I can get anywhere within 12 feet I care to go (that’s enough to go to the bathroom or across the room to turn on the ceiling fan). If I’m traveling and I need some extra mobility, I can add an extension, but 24 feet is the max. I'm self conscious about the bulge where my port sits on my stomach, certain that everyone can see, though I doubt most actually do. But I rarely tuck in my shirt just in case. It means early dinners, no late night movies, no unplanned trips out of town. It means declining dinner parties and missing meteor showers. It means my wife suffers, too. She wants to be with me, and I have to be in the bedroom. I see the nurses and nephrologist at least twice a month, sometimes more. Any cold symptom could be a cold, or it could be a symptom of peritonitis, so at even the suggestion of illness I’m put on antibiotics. I take lots of meds. We have to keep the area where I set up treatment very clean, which means we had to ban our pets from the bedroom. It took me several months to not feel terrible when the cats would cry outside the door because they wanted to sleep with us. I still feel bad about it – they don’t understand why they can’t sleep with us anymore. I mentioned the weight I need to lose. Every day, I walk around with 2 liters of dextrose solution in my body, which means I absorb 400-700 calories just standing here. I don’t tell you all this for pity. I share this with you in the hope that if you know someone in need, and you can help, that you try. It’s important. There is currently one kidney for every five people in need. That math will just never work.
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Old 11-13-2015, 02:12 PM   #189
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I had no idea.
That sounds very restricting, and i can imagine very isolating.
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Old 11-13-2015, 04:28 PM   #190
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at least you have us idiots to keep you entertained.
Tell the wife to just kick it with you in the bedroom, watch tv in there
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Old 11-13-2015, 04:58 PM   #191
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Originally Posted by Fire Me Boy! View Post
Hey everyone. I initially wrote this after a discussion on dialysis tech (this new belt-style 24-hour dialysis device) and donors. I was going to post on Facebook but chickened out. I can't really explain. But I feel somewhat compelled, so if you take the time to read it, thanks. It's kind of stream of consciousness, so sorry for the wall of text.
Damn, that's quite an ordeal, but I guess you've gotta do what you've gotta do. Sounds like you've adjusted pretty well to this situation. Thanks so much for sharing your plight with us here on CP. Hang in there, bro!!!
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Old 11-13-2015, 05:05 PM   #192
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Damn, that's quite an ordeal, but I guess you've gotta do what you've gotta do. Sounds like you've adjusted pretty well to this situation. Thanks so much for sharing your plight with us here on CP. Hang in there, bro!!!

It is what it is. The alternative really sucks.
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Old 11-13-2015, 06:58 PM   #193
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It is what it is. The alternative really sucks.
Yup, let's please stay away from the alternative. Heck, sooner or later tissue engineering will evolve so that organs will be 3D printed from stem cells and such. Actually, my daughter is a grad student doing tissue engineering and related 3D printing! So, hang in there....less intrusive solutions are on the way!!!
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Old 11-13-2015, 07:17 PM   #194
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On the bright side, you've still got your thumbs. So, if you ever need to hitchhike, or do a Fonzi impersonation, you're golden.
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Old 11-13-2015, 08:43 PM   #195
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