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Author Topic: Not Been Around For A Few Weeks  (Read 747 times)
Paul
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That's another fine TARDIS you got me into Stanley

« on: July 14, 2018, 04:51:55 AM »

Been off board for some time. Sorry, this was due to the fact that the staff at the hospital decided that the best answer to my dialysis problem was to put the speed up as high as possible. This was exactly the WRONG thing to do, and when they finally worked the problem out (https://ihatedialysis.com/forum/index.php?topic=34460.msg524889#msg524889) I actually needed exactly the oposite (slow speeds). As well as the risk of giving me a heart attack, the high speeds also drained me. I was going home from dialysis, falling asleep almost immediately, and sleeping up to an entire day after that (literally up to 24 hours, occasionally more). I live alone, so the short periods of consciousness were taken up with housework, shopping, etc.. So I have not had time for other pursuits, like forums and emails.

Now they at last know what the problem is, and are using slower speeds, hopefully I'll be here more often.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Charlie B53
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« Reply #1 on: July 14, 2018, 05:26:18 AM »


Interesting question.

Does pump speed have effects on our body more than just the amount of blood flow through the machine?

I too am tired out by treatments.  Afterwards I go hame,, eat a half a sandwich or something and head to bed.  I sleep anywhere from 3 to 6 hours.  I have never establish any other relationship with treatment other than the larger the take-off the more tired I seem.

I don't think they ever change my pump speed since we started using my fistula.  With the perma cath it had to stay slow as it never would flow nearly as well as my arm.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: July 14, 2018, 08:54:26 AM »

When in centre everyone with a heart problem was on a low pump speed.
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
iolaire
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« Reply #3 on: July 14, 2018, 11:20:43 AM »

Iím glad you have found the issue.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
lulu836
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« Reply #4 on: July 14, 2018, 01:27:47 PM »

My problem with feeling exhausted after HD was the amount of fluid removed.  It has taken me 3 years to resolve to the renal diet and also fluid consumption.  Not saying I am totally compliant 100% of the time but following the rules makes me feel a LOT better after dialysis.  Today was a dialysis day for me and after 3 1/4 hours I feel fine.  I work very diligently to drink only enough to satisfy my thirst.  I budget fluid if I'm going out or if I want a SMALL piece of watermelon or if I just absolutely must have a rootbeer float.  It all works out and I'm a lot better for biting the bullet and following the rules (mostly).
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Of all the things I've lost, I miss my kidneys the most.
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #5 on: July 14, 2018, 03:10:54 PM »

Does pump speed have effects on our body more than just the amount of blood flow through the machine?

I'm told "Quite a lot." Human body not designed for dialysis.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #6 on: July 14, 2018, 03:14:26 PM »

It all works out and I'm a lot better for biting the bullet and following the rules (mostly).

I managed to get with the diet immediately, took me well over a year to manage to get my liquid down. Until only a few months ago I was needing 4 litres most dialysis, and never less than 3.5. Still rarely go below two litres, usually 2 to 2.6.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Charlie B53
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« Reply #7 on: July 14, 2018, 04:15:07 PM »

I don't mean to brag, but I am VERY hard on myself.  Most of the time my take-off stays just under 2 K.  But there have been times that I spend out in the yard and garden with the heat and humidity here in Mid-Missouri that I have come in at only .7 over.

Then there are those rare times I am actually UNDER.  Too many of these in a row and we start thinking about lowering my dry weight.

Like the last couple of weeks I have been coming in almost FOUR Kilos UNDER.  I suspect it is a side effect of the antibiotic induced diarrhea which has since changed (texture and smell) into C-Diff.  Strange, I don't think I am 'Sick'  Just gotta go to the bath far too often.

We will most likely readjust my dry weight down a bit, but I am trying to put that off till this bug gets cleared up.
« Last Edit: July 15, 2018, 07:30:48 PM by Charlie B53 » Logged
rcjordan
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« Reply #8 on: July 15, 2018, 06:36:35 PM »

I've only been on hemo for a little over 6 months now, NxStage for the last 2 months of it.  I'm also very hard on myself and can usually keep the pull down to .8-1k.  I'm lucky in that I still produce about 1k of urine, so the small bit of fluid restriction is reasonable.  I'm still very fatigued, but hemoglobin is low (coming up slowly).  When in the clinic, I'd crash and nap a couple of hours after my mid-day session, which messed up my night sleep.  One of the first things I did on home hd was to shift the sessions to early evening, wrapping up around 9.30pm.  This has worked out well, sleep-wise, and I am sleeping better/more.
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Coastal US, NE North Carolina
2018 right nephrectomy - cancer. Left kidney not filtering, start hemo. After 3 months, start Nxstage home hemo
GA_DAWG
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« Reply #9 on: July 15, 2018, 09:59:14 PM »

Like some others, when I get home from a session, I usually have a sandwich, then crash for a couple of hours. then I am up until 2:00 AM or so, sometimes later. Not really all that different than when I was in college along long time ago. In some ways it works out well because it allows me to sleep a couple of hours while on the machine, which passes the time much easier. I am pretty hard on the fluids and am lucky with what I am sure is some residual activity. My wife continues to be amazed I can eat a meal with little to nothing to drink. Like most people, I do sometimes cheat a little, but try to keep that in moderation. Rather than an entire cantaloupe, I have four bites, and that is it.
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GA_DAWG
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« Reply #10 on: July 15, 2018, 10:00:50 PM »

Dang it. It is good to see you return Paul. One quickly learns when a person disappears for a while on dialysis, not to ask questions. It is always a good feeling to see the ones who return.
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MooseMom
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« Reply #11 on: July 16, 2018, 02:07:04 PM »

I echo what GA Dawg said.  I'm glad to hear that things are better for you now!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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