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Author Topic: fluids, and frustration  (Read 6735 times)
natnnnat
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« Reply #25 on: March 15, 2012, 03:34:07 AM »

River, about the blood measures:
From  http://www.edren.org/pages/edreninfo/blood-tests-in-kidney-disease.php
(the layout is better there and they have pictures, but the text reads as follows):

This page describes some blood tests that are commonly used in patients with kidney diseases, or to measure kidney function in people who may have kidney disease.
How well are my kidneys working?
Creatinine (Creat)    Urea
Creatinine clearance (CrCl)    Glomerular filtration rate (GFR and eGFR)
Minerals the kidneys normally put out
Sodium (Na)    Potassium (K)
Calcium (Ca)    Phosphate (PO4)
Other blood tests
Haemoglobin (Hb)    White cell count (wbc)
Platelets (plats)    
Albumin (Alb)    Parathyroid hormone (PTH)
Is my dialysis good enough?
Urea reduction ratio (URR)    Kt/V
Drug levels
Ciclosporin (cyclosporine, CyA)    Tacrolimus (Tacro)
Sirolimus    

Tests for how well are my kidneys working?

Creatinine - Creatinine is the best routine blood test for measuring how well kidneys are working. It is a waste product produced by muscles and put out through the kidneys. This means that 'normal' levels depend on how much muscle you have, and this can cause some problems in spotting kidney disease.

Creatinine comes from muscle. The little girl has normal kidney function and a creatinine level less than 60. The body-builder has normal kidney function and a creatinine of 120. For the girl, a creatinine of 120 would be very poor kidney function. Cartoon by Beth Shortt, copyright EdREN. Contact renal@ed.ac.uk if you would like to use this figure.

Because of the problem of differing amounts of muscle in different people, most labs now also report an estimated GFR (eGFR) with creatinine measurements, and this can be very useful - see below.

Big changes in creatinine are likely to be important, whatever the creatinine level. However different labs may give significantly different results for the same creatinine sample, because there are different ways of doing the test.
Normal blood creatinine is 60-120 micromol/litre (0.7-1.4mg/dl) - but see the cartoon above for a caution about this that applies particularly to small, disabled, or elderly people. In many people, 'normal' creatinine can sometimes conceal 50% loss of kidney function.


Urea - Urea is a small molecule that is produced in the liver from protein that you have eaten. It is normally put out by the kidneys, so blood levels rise as kidneys fail. However other things change the level of urea in your blood too, so that it is not a simple guide to kidney function. Here are some of the things:

    Blood loss
    Fluid - if you are short of fluid (e.g. drinking very little), your kidneys keep more urea in the blood
    How much protein you have eaten
    Liver disease can stop urea being produced normally

Urea is still a very useful test when used together with creatinine. It can also be used to measure how well dialysis is working to clear waste products (see Is my dialysis good enough?).
Normal blood urea is 3.5-6.5 mmol/litre (20-30mg/dl)

 

Creatinine clearance - You can get round many of the problems of blood creatinine measurements by collecting urine for 24 hours and measuring how much creatinine is in the urine at the same time as finding out how much is in the blood. This is called creatinine clearance. If any urine produced during the 24 hours is not collected the result will not be accurate.
Normal creatinine clearance is about 100ml/minute

Glomerular filtration rate (GFR) and estimated GFR (eGFR)

GFR is a test of how much the kidneys are filtering. It is normally about 100 mls/minute. This means that the kidneys are removing all the creatinine found in 100mls of blood every minute - almost 150 litres per day! Most of this is absorbed back into the body, so that only 1-2% of the filtrate appears as urine. Creatinine clearance (see above) gives quite a good measure of GFR, but requires a 24 hour urine collection for measurement. Two other ways of measuring GFR are:

    eGFR - Using blood tests, age, sex, and sometimes other information to estimate the GFR from the MDRD equation (eGFR). This isn't as good as measuring it, but is much simpler as it requires just one blood test. It is being used increasingly to spot kidney disease earlier than previously, and earlier than would be possible using just creatinine measurements (see above)
    Measured GFR - Injecting a tiny amount of a radioactive substance and measuring how quickly it disappears from the blood, or appears in the urine, is used to calculate GFR.

Knowing your GFR is very useful. It can give you an approximate % kidney function, and be used to show your CKD stage - more info about low GFR and CKD stages.

If you are interested in calculating your own eGFR, you can try these links. You need to know your creatinine. 

    Calculator from the Renal Association. Links to information about CKD stages.
    Calculator from Nephron.com. Click on correct units for creatinine - umol/l in Europe


Normal GFR is about 100ml/minute/1.73m2. eGFR provides a rough estimate of the percentage function of your kidneys

Normal kidneys filter 150 litres per day. That's 100 mls per minute. It also adds up to 33 Imperial gallons, 40 US gallons per day. Cartoon by Beth Shortt, copyright EdREN. Contact renal@ed.ac.uk if you would like to use this figure.

Tests of other things the kidney puts out

Sodium (Na) - Sodium comes from salt, which is sodium chloride. Although there is often too much of it in your body when your kidneys don't work properly, its level in the blood does not change much. This is probably because sodium makes you thirsty, so you drink more until the level is normal again. Having too much sodium in the body causes high blood pressure, oedema (swelling), and eventually severe problems such as heart failure and fluid on the lungs (pulmonary oedema). Removing sodium is an important part of dialysis treatment. Diuretic drugs (e.g. furosemide) increase the sodium put out by the kidney. Most people with kidney disease need to keep down the amount of salt in their food.  In the western world we have a tendency to add salt to food or in prepation of food using salt, therefore we take too much salt which may increase blood pressureby as much as 10/5, for example140/85 to 130/80.
Normal blood sodium levels are 135 - 145 mmol/litre


Up to top

 

Potassium (K) - Potassium comes from food, especially fruit, vegetables and nuts. Extra potassium you eat is normally put out in urine, so its levels in blood may rise in kidney failure. Blood potassium is normally precisely controlled and important. High levels can be very dangerous as they can cause serious heart rhythm abnormalities, including cardiac arrest, even before you have any other symptoms from it.
Normal blood potassium levels are 3.5 - 5.0 mmol/litre


How high is dangerous?

There isn't a simple danger level, but levels above 5.5 usually cause concern, and levels much above 6.0 may be dangerous. Levels above 7.0 are certainly dangerous.

    Diet is the most important way of controlling potassium levels in renal failure. More info.
    Potassium is lowered by dialysis, but in patients treated by haemodialysis it rises between treatments, so it is important to be careful what you eat.
    Some medicines make blood potassium higher. This is more of a problem when kidneys don't work properly.
    Sometimes high potassium levels may not be accurate, for instance because of delays in getting the sample to the lab.

Treatments for dangerously high potassium may include giving sugar (glucose) and insulin, and some other measures. If it is very high and kidney function is poor, dialysis may also be necessary.


Calcium (Ca) - The body's calcium is mostly in bones, but in kidney failure there are problems with calcium and bones. Low levels of calcium may lead to thinning of bones, very low levels lead to weakness, tingling, and other problems. High levels cause sickness. It is measured regularly in patients with kidney diseases because:

    Blood calcium may be low in renal failure, without treatment.
    Special types of vitamin D (calcitriol, alfacalcidol) are given to prevent renal bone disease and to raise blood calcium.
    Medicines (phosphate binders) given to keep blood phosphate low may also raise blood calcium.
    After years of kidney failure, parathyroid hormone levels often rise, causing high blood calcium levels - see parathyroid hormone (PTH).

More information about renal bone disease

    Normal blood calcium levels are 2.3 - 2.5 mmol/litre (8.4-10.4 mg/dl).
    Changes in blood proteins (albumin) may change these normal ranges though.

 

Phosphate (PO4) - Phosphate levels are high in kidney failure. If not controlled, this causes

    bone disease to be worse
    itching
    calcium deposits to form in blood vessels and in other parts of the body - these may cause serious disease.

More information about renal bone disease

    Normal blood phosphate levels are 0.9 - 1.3 mmol/litre (2.5-4.3mg/dl).
    In renal failure the aim is to keep levels at or below 1.8 by controlling the amount of phosphate in diet and by using phosphate binding drugs.

 

More information about control of phosphate by diet and drugs

Parathyroid hormone (PTH) - Parathyroid hormone is measured from time to time in patients with kidney diseases to prevent renal bone disease (renal osteodystrophy; read more information about renal bone disease). After years of kidney failure, PTH levels often rise, causing calcium to be removed from bone and blood calcium levels to be high.  Normal levels of PTH are different when measured in different labs. In kidney disease it may not be best to keep PTH levels completely normal - some guidelines suggest just keeping it less than 2 or 3 times the normal level at 150-300 mg/L.  This is best done by controlling blood phosphate levels (see above) or by taking vitamin D supplements such as altacalcidol.  If PTH levels cannot be controlled by these measures alone then parathyroid glands may need to be removed in an operation called parahyrodiectomy.  There are 4 parathyroid glands, all located in the neck, behind the thyroid gland.


Other blood tests

Haemoglobin (Hb) - The stuff in red blood cells that carries oxygen. Too little is anaemia.

    Normal haemoglobin levels are approximately 110-180 grams/litre in men and 115-165 g/l in women. (Many labs use grams/decilitre, g/dl, for which normal values are 11-18 rather than 110-180)
    Erythropoietin (EPO) and other treatments aim to get dialysis patients close to normal (usually over 110 g/l)

 


White blood cell count (wbc) - White blood cells fight infection. Levels are often high during infections, but may be made low by some drugs, such as those used to lower the immune system (e.g., azathiaprine, mycophenolate) and sometimes also by infections. If the numbers are very low there is an increased risk of serious infection. Different kinds of white blood cell are added together to get the wbc. Neutrophils are the type that is most important for fighting common infections, and they are particularly likely to be affected by drugs.

    Normal wbc is approximately 4-11 thousand million per litre

 

 

Platelets (plats) - Platelets are needed to form blood clots. If the numbers are very low (below 50) the risk of serious bleeding increases. Patients with kidney disease quite often have slightly low platelet counts, but other diseases, and drugs, may also cause low platelet counts.

    Normal platelet count is approximately 150-350 thousand million per litre.

 

 

Albumin (Alb) - Albumin is a blood protein. It usually makes up more than half of the protein in blood.  Low levels can contribute to ankle swelling.  Some things that may cause low levels include:

    Leakage into urine - heavy leakage is called nephrotic syndrome
    Poor diet and starvation
    Infections or other causes of inflammation
    Liver disease

    Normal albumin levels are 35-45g/litre.


In dialysis patients it has been found that low albumin levels can be a marker for not doing well on dialysis. Unfortunately different methods used to measure albumin mean that different labs can get quite different results for the same samples from patients with kidney diseases.

 
Is my dialysis good enough?

Either of two tests may be used to measure how much haemodialysis you get. These tests aren't the only things that's important though. It is also important to have long enough dialysis to get fluid balance right, and to correct some other chemicals, such as Phosphate.
 
Urea Reduction Ratio (URR) - This is a measure of how much waste products such as urea have been reduced by one haemodialysis treatment. It is used to check that enough haemodialysis is being given. If it is too low more than once, you should find out why.


    URR should usually be over 70% if you are dialysed three times each week and have little or no remaining kidney function.


Kt/V - This is a more complicated test of how good dialysis is. URR is a simpler test. Kt/V includes more than just the change in urea. If it is too low more than once, you should find out why.

    Kt/V should be over 1.2 for each dialysis if you are dialysed three times each week and have little or no remaining kidney function.


Drug levels

Ciclosporin, Tacrolimus and Sirolimus are drugs that are used to prevent your immune system from rejecting your transplant. They all need blood tests to make sure that you are taking enough, but not too much. Too much may cause serious side effects, while too little may not prevent rejection. The exact levels you are aiming for depend on a number of things, for instance:

    How long ago your transplant was
    The other medicines you are taking
    The risk of rejection in your own case

- so we have not given a target range here. If you want to know, you should ask your transplant team what your target levels are.


Further information

Dialysis patients will be interested to see the NKF information 'Know your numbers':

        For dialysis patients
        For transplant patients

 Quite good, but wrong units for Europe, and for dialysis patients only

    Nephron.com - dialysis report card

 

 

Acknowledgements:  The authors of this page were Neil Turner, IA Ihmoda & Bryan Conway . It was first published in June 2004 and reviewed in May 2010 by Heather Kerr. The date is was last modified is shown in the footer.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
Riverwhispering
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« Reply #26 on: March 15, 2012, 06:33:08 AM »

Thanks Gerald for the answer,  I thought you meant something different.  I've been having those tests since I first found out I have this kidney disease and keep a excel spread sheet with my lab results.   

I was thinking when you said nutrients you meant like vitamin C and other vitamins and minerals that aren't on the renal panel stuff. 

the only vitamin i have checked is Vitamin D which is quite low, last time it was at 18 which is better then the first time it was tested at 12.9

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galvo
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« Reply #27 on: March 15, 2012, 03:07:57 PM »

Good work, natty. I've bookmarked that site and have decide to do a thorough review of my condition, using that as my standard. I dips me lid to ya!
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Galvo
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« Reply #28 on: March 15, 2012, 04:55:57 PM »

hi Natalya

I was thrown off by Gerald's use of the term "Nutritional testing"  I know about the renal panel since that's what I get done every time I see my Neph doctor.

 Thanks for the reply
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RichardMEL
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« Reply #29 on: March 17, 2012, 11:46:20 PM »

GL's suggestion to weigh naked got me thinking (no NOT what you are all imagining!!!!  :rofl;) ... I mean that when you weigh at D sessions you should always wear roughly equivalent clothes. So when I started I decided to have a set "outfit" I would wear of roughly jeans and a shirt, socks shoes etc but I would remove keys coins etc from my pockets and obviously jackets or whatever for when it was cold - the idea that clothing or extras wouldn't make the amounts push out and that weights would essentially be consistent in that regard.

I think GL's suggestion pretty much mirrors what I said re keeping tabs on your own changes between sessions yourself, so you can get more of an idea what's going on.

Also yes the not obvious fluids, as in stuff that can retain fluids like rice, noodles etc can really up your amount if you're not careful and you do have to account for them all - ice cream, jelly, stuff in fruit (eg: watermellon), soups, etc.

Also consider foods with salt that help push water back into the system, as in you retain more internally.

I would *NOT* stop drinking or eating between treatments - that would not be smart. Your body requires intake of water and nutrients from food and drink - the problem is you retain too much..but you still need it. dehydrating your body/kidneys can lead to more damage, not to mention weakness etc.

It's great you made the noodles with no salt and stuff so you're absolutely doing the right thing to try and keep tabs on that stuff.. I guess try and think about everything you eat that could contain hidden fluids, and extra salts... so
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
GraphicBass
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« Reply #30 on: March 18, 2012, 05:06:35 AM »

Gulping water and thirst never satisfied? Sounds as if you have a blood sugar problem -- too high!

As a life-long diabetic, I've learned that when I am excessively thirsty, it means my blood glucose levels are too high. The water is to "thin down" the blood, which can get syrupy thick.

Check your labs for the A1C score. Should be around 7 (at least that's my goal). Might be different if you're actively on dialysis. Or ask a diabetic friend to test a drop of your blood with their strips/meter.

gary
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gothiclovemonkey
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« Reply #31 on: March 18, 2012, 08:15:39 AM »

Ive been tested for diabetes and dont have it, but i doooo eat alot of jolly ranchers, so its possible it gets high sometimes. when i was younger i always had a low blood sugar. I think the water issue, i LOVE ice water and once i start i cant stop, no control over it, its like those chips that says 'once u pop u cant stop' LOL i hate chips, but water is like that! i need to invent a straw that only lets u have sips of water for a few mins between sips haha like an I.V. drip  or something

my brother says im a medical anomaly lol nothing ever makes sense with my body.


well yesterday i was 7 over, instead of 10... so im slowly doing something right, although im not sure what.
this week wil lbe a challenge as im going on vacation, this weekend, but after i get back i WILL be doing everything in my absolute power to figure this out. And while im on vacation, im taking a water bottle, i think its 20 some ounces, and thats what ill drink.

what type of scale is best? i looked at htem, and there are so many different kinds!
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« Reply #32 on: March 20, 2012, 12:05:39 AM »

Get a digital scale that can be set to kilograms and is accurate to the tenth of a kilogram. If you can, get one that can also be calibrated, so you can match it up with the "official" dialysis scale. Calibrate it when you're wearing what you wear to dialysis, then weigh in various stages of undress and make notes of the differences.

For example, I know that without my shoes, my scale reads 1 kg less. With pajamas on, it read 1.3 kg lower. Naked, it reads 1.7 kg lower. I put that on a Post-It note on the wall in front of my scale, so when I weigh myself when I wake up, or any other time during the day, I can tell where I am in relation to my dialysis weight.
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- Matt - wasabiflux.org
- Dialysis Calculators

3/2007Kidney failure diagnosed5/2010In-center hemodialysis
8/2008Peritoneal catheter placed1/2012Upper arm fistula created
9/2008Peritoneal catheter replaced3/2012Started using fistula
9/2008Began CAPD4/2012Buttonholes created
3/2009Switched to CCPD w/ Newton IQ cycler            4/2012HD catheter removed
7/2009Switched to Liberty cycler            4/2018Transplanted at UCLA!
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« Reply #33 on: March 20, 2012, 02:55:22 AM »

Thanks Restorer - I use a similar crude method of monitoring weight, but yours is definitely more refined (and scientific!)
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RichardMEL
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« Reply #34 on: March 20, 2012, 04:41:01 AM »

I have a slightly different tack on the scales.

I didn't bother to try and sync my home scale (digital, accurate to 0.2kg) to the hospital one, though I did note that it was out by 0.4 or something as a matter of course, but for me what was more impiortant was the CHANGE in my weight between sessions. It didn't matter so much if hospital scale said 78.4 and my scale said 79. As long as I noted that it was 79 after D when I got home (and I always tried to do that weight ASAP without eating or drinking anything) then over the next day or two between treatments, regular weights - 79.3 79.9 80.4 etc would give me the change from that initial reading. Given the calculation of fluid to remove is basically worked out based on the change in weight between treatments anyway. It's more important that the scales are reasonably accurate in their readings.

Anyway here's a thought along with weighing yourself - get a diary.. make it a intake and output (ugh) diary.

in it, note when you eat (and what), and what you drink (and approx how much - eg a glass might be 200ml, or a mug 250ml, a shot 30ml etc... and you can easily enough convert oz to ml - even most US cans of soda I notice give a ml value with the ounces). and well when you output.. keep a log of that too.

I know.. annoying and complex and all, but if you keep a log of what you eat and drink (and output even) it may help to find sources of extra fluid.

It may even be a good idea to take such a diary to your dietician and/or neph.

just a couple of thoughts.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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