I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Charlie B53 on May 23, 2017, 08:17:32 AM
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This allowed fluids thing has me all messed up. I try hard not to drink too much as I have already learned that taking off much more than 2 liters places a lot of strain on me, making me so tired and listless the rest of the day and well into the next. I am afraid the shock of these dialysis treatments will finish off what little residual kidney function I have left. I firmly Believe that little bit of kidney function seriously helps keep my labs as well as they are.
Most Mondays I come into treatment slightly over 2 kilo's above my dry weight. Not this past weekend but the one before the weather was pretty decent, warm enough but with enough breeze that weed wacking the yard I never felt sweaty. I stayed busy both days, trimming everywhere then mowing all of our large yard. I even got thirsty enough that I had made a couple three tall glasses of Kool-Aid. I've learned not to chug the whole thing, instead taking an hour or two just sipping maybe a half a mouthful plus an ice cube, taking my time so to fully satisfy my thirst, not just filling my belly. It must have worked quite well as come Monday's weigh-in I was .7 UNDER my dry weight. I was flabergasted to say the least. I must have been a fluke as come Wednesday I was once again my usuaul kilo plus over.
This weekend I was far more careful. I wasn't working in the yard but instead spent both days alongside the ponds with Grandson fishing. Still I was careful not to drink much, so come Monday morning's weigh-in I was shocked to find I was more than THREE Kilo's OVER! How did I do that?
I had been soo good all weekend that Sunday night when the Wife said she wanted sorbet I agreed and headed to the local market. We haven't had ice cream in I don't know how long. I LOVE ice cream. Growing up my Dad owned the Refrigeration Company. We had an ice cream maker in the garage just like one at the local ice cream parlor. Dad would stop by the Creamery on the way home from his Shop every Friday and pick up one of those big 5 gallon jugs of ice cream mix and we would make about 8 gallons of ice cream stacking the gallon containers in the freezer to eat all week after dinner every night. Most of our lives we have bought ice cream and enjoyed it very often. Until the Wife became Diabetic.
Since we rarely eat ice cream I went to get some. And promptly ran into one of the Clinic Nurses in the ice cream aisle at the store. Busted! I reminded Nurse how well I usually am with my liquids, and how I came in UNDER last Monday and that I have been outside all this weekend. She just laughed and told me how fortunate I've been. Yeah, well I guess I screwed all that stepping on the scale and being so far over this time. And I didn't even eat the whole thing. There is a whole lot left over in the freezer!
So maybe I need to start stepping on that scale in the bathroom again.
sp mod Cas
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Hi Charlie, are you wearing the same (in weight) cloths when you go to D? That's why 2 or 3 D outfits that weigh the same are handy.
Or you might have had loose change in your pocket?
At some point you will start drinking 'sort of' the same all the time, and less during the weekend. At some other point you'll feel liquid even when your weight isn't up. BP up for no apparent reason? Probably fluid.
And than there will be a point where even machines can be wrong.
I do hope your residual K function stays with you for quite a bit longer, everyone is different.
Luck, love and strength, Cas
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They get that fluid level by subtracting your dry weight from your current weight as measured on the scale. That includes all your clothing (as mentioned), and what you have eaten over a couple of days. It's just an educated guess. Averaging that weight over a week or so is a better indication. Hang in there Chaz......... :beer1;
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All winter I wore the same insulated jeans, but since the weather has warmed I've switched to knee length cargo shorts. Change isn't ever much, I use my debit card for everything. I rarely ever have any money. I'm married.
With warmer weather I spend far more time outside. I've been cooped up in the house all winter. I am an outdoors kinda Guy. Unless it's raining. Three acres of yard, garden, I always can find something to do if the sun is out. I sweat, a LOT. I always have had a few more than a couple of extra pounds so sweat comes very easy to me. Days that we have a decent breeze it doesn't seem like I sweat much as it evaporates right off. When real Summer gets here things will be a world different. The humidity combined with the temps the sweat cannot evaporate. Then I melt. Buckets. Then I keep a glass of ice water on the kitchen counter, come in for a drink almost every hour or I will dehydrate too much too fast and get sick. I know when that happens as the dizzyness hits, sometimes very quickly. Then I have to stay inside in the A/C until my body temp comes back to normal. I've almost dropped out at the far edge of the from yard one year long ago. Ever since I have had more of a sensitivity to the heat. I won't make that mistake again. Wife and all the neighbors were gone to work, I was working seconds then and did much of our yard work before I went to my job. That day I knew if I would have tried to make it to the house I would have dropped in the yard, in full sun, and laid there for hours so I just held onto a tree branch in the shade until I felt better. To close, I don't want to do that again so I pay better attention.
The Blood Pressure med that I screwed up and didn't realize I was out of finallly came. I started taking it again. Almost a 50 point drop in my pressure. So much that I may have to cut out the other one Dr had me restart last week. I'll know better in a couple more days. One teens as far too low for me. Almost scary low. I'll see what I'm running during treatment tomorrow. This low pressure may be contributing to my tiredness yesterday and today. Still, I'll wait and see. Need a few more days pressures to make a better informed decision.
Most 'inside' days I only have my one large mug of coffee, then maybe a 16 ounce glass of ice cubes. Sometimes two glasses of ice. Nothing at all like before. I used to go through at least three 32's of lemonade back when I was working. But that was when my kidneys worked much better. Doesn't seem like it's been that long.
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I know how yucky it is to get dehydrated. I can't imagine being a dialysis patient because I drink A LOT! I used to ride horses as a teenager and into my early 20's. I would get so heat sick sometimes that I would throw up. It was terrible. I would have a very hard time limiting the fluid while still working outside.
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Dry weight is a pain in the butt. I try to wear in winter sweat pants, tee shirt during the summer its shorts and tee shirts. I always remove my shoes before weighing. Since I've lost weight most of my shorts now need a belt. I weigh my belt on a kitchen scale and subtract it from my weight. The other kicker is when my solids elimination system bogs down, I easily put on a couple of kilos until it begins outputting again.on a warm sunny dry day the lower humidity means swat drys fast on humid days you become ringing wet. All tod weight is the biggest pain in the butt in dialysis.
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I wear the same types of clothes year round... tshirt, sweat pants or pj pants, and slippers with no socks... I have a sweater and gloves that I put on after I'm weighed, because it is NEVER warm in that unit
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Yep, I have a dialysis uniform. T-shirt and capris in the summer, T-shirt and fleece leggings in the winter so my dry weight is consistent.
And I layer up for coming and going, and bring a huge blanket because it does get cold!
Although I've noticed that if I eat a large meal or two between sessions, everything gets thrown off.
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What I have realized is it is important to listen to your body. I watch input and output and depending how I feel about them I adjust what I allow them to take off.
If a tech decides to take off more I insist they put it back with saline. Right now I am in trouble with my nephrologist because I am having the clinic be aggressive in removing fluid. Right now I am several kilos below my dry weight, this is because I am in Congestive Heart failure and I feel better with large fluid withdrawals. Next Tuesday the nephrologist has called me in I think to read me the riot act. I have been unable to sleep since my heart attack in November. After 6 months of virtually no sleep I don't care what he wants. If I need to change doctors I will. The medical group I go to has a new multi disapline practice, the group contains, a cardiologist, a nephrologist , a gp.
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Michael, you are a special case for a while yet. Your weakened heart is not able to maintain the pressure balance required and one side effect is that nasty Congestive Heart Failure leaving excess fluid both within your lungs and the heart sac. Stick to your guns. Removing more flulid and in effect running your body slight dehydrated, yet not so much as to have the usualll dehydrated symptoms is the best treatment until your heart regains strength.
I trust you are going to rehab, careful about exercising to regain strength. Once your Neph understands and gets the nod from your Cardiologist he should understand you are doing what you have to do.
Stay with it. You've got a good plan. The only plan that makes sense.
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The folks who can wear t shirts or shorts are luckier than at our center. It is kept so cold all of the patients are under blankets even in the summer. Actually it is worse in the summer. If one tech yells "I'm hot" the AC gets lowered regardless of how cold it already is and no amount of requests from patients will change it. Cannot convince them that during shift change while they wear the PPE, no amount of lowering the temp will help, but that as soon as they are able to remove it, they will be fine.
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The folks who can wear t shirts or shorts are luckier than at our center. It is kept so cold all of the patients are under blankets even in the summer. Actually it is worse in the summer. If one tech yells "I'm hot" the AC gets lowered regardless of how cold it already is and no amount of requests from patients will change it. Cannot convince them that during shift change while they wear the PPE, no amount of lowering the temp will help, but that as soon as they are able to remove it, they will be fine.
We patients are cold while on the machine because the machine lowers our blood temperature.. the staff is warm because they are up and moving all the time.. even though we may be freezing, it's artificial.. you don't want those who are taking care of you to pass out because of the heat..
This is why, even though I weigh in with a tshirt and pj pants, I put on a hoodie with the arms cut off (to make it easier to get at the fistula and put on the bp cuff) and put on fingerless gloves that go up to my elbows..
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Isn't it poss to 'wack up' the temp on the machine? In centre I increased the temp too. At home now it doesn't give a temp but a number (Nxstage) when warm, and sweating, turn temp down to 14, when cold turn up to 18. Only affects you, and not the 'person with the swinging needle'
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I'm pretty sure I've seen the machines in my clinic during the 'set-up' sequence display 'Heating' which I understood it to be heating the solution prior to it flowing into the actual dialysis filter. So it would be likely to have some setting that should be adjustable to a pretty tight range, very near body temp.
I've been meaning to get the model number of our Fresenius machine so I can look up and see if I can get a service or operators manual. Being a lifelong mechanical wizard, I am always interested in learning about machines of all types.
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Isn't it poss to 'wack up' the temp on the machine? In centre I increased the temp too. At home now it doesn't give a temp but a number (Nxstage) when warm, and sweating, turn temp down to 14, when cold turn up to 18. Only affects you, and not the 'person with the swinging needle'
Yes, but most set the temperature to what the patient's body temp is.. they put it lower because cooling the blood helps with low blood pressure and is easier on the heart.. my machine is usually set to 35C, which is generally about one degree lower than my actual body temp.. unfortunately, cooling the blood cools us down as well
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So it would be likely to have some setting that should be adjustable to a pretty tight range, very near body temp.
Fresenius 2008 series machines, and the NxStage PurFlow solution prep machine both have temp settings. The warmer for use with bags on NxStage also has a temp setting. The Fresenius setting is in deg C. The NxStage setting is in relative units only.
I've been meaning to get the model number of our Fresenius machine
If in the US, it is probably a 2008 series (2008, 2000K or 2008T are pretty much all the same from a control panel point, except the "K" does not have a touch screen and the "T" has a mode to enter data for clinic records). The BabyK is a 2008 series machine as well, but with some operational differences (no UF profile, for example), but it has the same temperature control. as the other 2098 machines.
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It was explained to me that if the temp on the machine is set too high, it will cause your body to react as though you have a fever and mess up the blood cells, red ones I believe they said. I know one tech did raise the temp a couple tenths during two treatments, and I felt terrible the next day, just like I has a cold.
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I dug this up from one of Obsidianom's posts from 09-30-2014 about dialysate temps. I found the topic under General Discussion.
COOL IT ! -New Research on dialysate temperature
« on: September 30, 2014, 01:03:58 PM »
Reply with quote
Medscape Medical News
Dialysate Cooling Reduces Hemodialysis-Induced Brain Injury
Diana Phillips
September 25, 2014
Using a cooled dialysate solution protects the brains of patients receiving hemodialysis from the progressive white matter injury to which they are otherwise vulnerable, results from a new study show.
To determine the effect that hemodialysis-associated circulatory stress has on brain white matter microstructure over time and to determine whether a dialysate temperature of 0.5°C below core body temperature mitigates the potential for damage, Mohamed T. Eldehni, MD, from the Division of Medical Sciences and Graduate Entry Medicine, School of Medicine, University of Nottingham, United Kingdom, and colleagues conducted a randomized clinical trial on incident hemodialysis starting within 6 months.
Of 73 patients enrolled in the study, 37 were dialyzed with a dialysate temperature of 37°C and 36 were dialyzed with a solution cooled to 0.5°C below core body temperature. The final analysis included 19 well-matched patients in each group who had undergone diffusion tensor imaging at baseline and at 12-month follow-up.
In aggregate, patients in both groups exhibited a pattern of ischemic brain injury reflected by increased fractional anisotropy (FA) and reduced radial diffusivity (RD), the authors report in an article published online September 18 in the Journal of the American Society of Nephrology.
In the group dialyzed with the cooled solution, "[t]here were no statistically significant changes in FA, RD, or [axial diffusivity (AD)] between baseline and 12 months," the authors write. "However, the group that dialyzed at 37°C had increased FA at 12 months compared with baseline." In the latter group, the mean FA of the statistically significant voxels highlighted in the paired images increased from 0.432 at baseline to 0.452 at 12 months. Moreover, using the John Hopkins University atlas for white matter tracts, the authors "found statistically significant voxels in 18 of 20 regions represented by this atlas."
A voxel-wise analysis comparing the 2 groups at baseline and at 12 months showed no difference in FA at baseline but a significantly higher mean FA in the 37°C group than in the cooled group at 1 year, the authors state.
With respect to hemodynamic performance and brain white matter integrity, "Repeated measures [analysis of variance] showed that the group that dialyzed at 37°C had a significant increase in mean arterial pressure (MAP) extrema points frequencies at 1 year, whereas the intervention group did not," the authors write. "Furthermore, in a voxel-based analysis, the correlation between MAP extrema points frequency during HD on 1 hand and FA and RD on the other hand was examined using [tract-based spatial statistics]. Higher MAP extrema points frequencies were associated with higher FA." There was no correlation between the number of intradialytic hypotension episodes and FA, RD, or AD changes, they report.
The increased FA, decreased RD, and stable AD observed in the control patients appear to correlate with a higher frequency of change in peaks and troughs of MAP, the authors observe. "The pattern that we found in this study of increased FA and reduced RD is rather unexpected, because these changes have been described in acute ischemic stroke within <24 hours. The [magnetic resonance] imaging at baseline and follow-up was performed on a nondialysis day within <24 hours from the dialysis session, and therefore, it is plausible that our findings — indicating acute ischemia — are related to the previous dialysis session, which then was exacerbated over 1 year of [hemodialysis] treatment." This finding supports the hypothesis that patients receiving hemodialysis are susceptible to recurrent acute ischemic brain insults that result from hemodialysis-induced circulatory stress, which is similar to findings previously observed in the myocardium, they note.
The absence of changes in brain white matter FA, AD, or RD in the cooled solution group at 1 year, and the stability of the MAP extrema points frequencies during the same period, suggest that reducing the dialysate temperature "seems to have a significant effect on hemodynamic stability, organ perfusion, and end organ damage in this population, which is burdened with impaired hemodynamic regulatory functions," the authors write.
On the basis of these findings, the authors suggest this study "justifies additional larger-scale testing of dialysis-based interventions to reduce the burden of morbidity and mortality in [hemodialysis]."
The authors have disclosed no relevant financial relationships.
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Oops than I must have a problem in the head surely, I used to put the Fresenius machine on 37.5 when in clinic, and the Nxstage on 16 (I'll call them tomorrow to ask what that is in Centigrade).
I don't think I'll change the temp though. I really hate being cold, and after uhm 20+ years D, it surely is too late now.
I did notice a slight change of topic of the thread I think :banghead;