Some general questions

[freddagg]

Hi,
All fairly new to this so I have a few questions. I have looked and searched around the various posts here but found nothing specific (apologies if my search skills are lacking and I am asking questions which have already been answered).

1. What is the difference between GFR and eGFR?
I understand GFR is the 'actual' rate and it is difficult to accurately determine so the eGFR has been developed to give an 'estimate' and it is adjusted depending upon gender, age and race. So,
a. Are the 2 terms interchangeable? Not many seem to distinguish them
b. Is one better than the other when determining the stages of CKD?

2. How do they measure the effectiveness of dialysis (HD or PD)?
Obviously dialysis is not exactly the same as having fully functioning kidneys otherwise there wouldn't be so many diet / fluid restrictions, binder medications, blood monitoring etc.
Logically (I think), a GFR/eGFR should go UP once dialysis is started as it removes creatinine and therefore would change laboratory analysis results. Does it get back above the magic 90 figure?
Is there an 'ideal' range for key parameters to look for? What are these?

3. How often do you need blood tests when on dialysis?
I guess there will be lots when commencing but once you are 'stable', is it normally weekly, monthly, 3 monthly?
For those on HD, can you use blood from your fistula? If yes, which 'side' should you take it from? (arterial or venous)

Thanks for your time

[iolaire]

3. How often do you need blood tests when on dialysis?
I guess there will be lots when commencing but once you are 'stable', is it normally weekly, monthly, 3 monthly?
For those on HD, can you use blood from your fistula? If yes, which 'side' should you take it from? (arterial or venous)

Monthly, from the Fistula arterial at start, at the end of the session from same are to calculate the Kt/V a measure of dialysis effectiveness.

[Simon Dog]

Blood tests are generally done monthly unless there is something the medical team wants to monitor more closely (for example, if you have a low HGB r a blood loss incident).  Monthly labs are also drawn at dialysis if you are on the xplant list.    The blood is taken off the dialysis line.   If you have blood drawn at a non-dialysis time, it is taken from the non-fistula arm.  I take my blood from the arterial side before I do any saline flush of the line.

Effectiveness is measured by Kt/V (clearance * Time / blood volume).  There are numerous Kt/Vs - one used for HD, one for PD and a third for home HD (the later to standardize across different treatment frequencies).   There is a different cutoff for each - for example, you can't directly compare a PD Kt/V to and HD one to a Home HD one.   And yes, I know there is controversy regarding the effectiveness of Kt/V as measure, but that is what is used to see if you are "making goal".

Does it get back above the magic 90 figure?

LOL 

[Charlie B53]

My Fresenius clinic runs a weekly test for something.  I don't remember for sure but I think it is hemoglobin.  Otherwise they test monthly and draw the samples from the port on the line set so not to have to stick anyone.

IIRC samples are taken both before treatment begins and again once finished so labs can make some comparisons to before and after treatments.  I need to remember to ask the Dr about this as I am curious as to what those differences are.

Again, I don't know exactly what, only that some of our lab values are not expected to be the same as a more 'normal' none renal patient.  Something about increased risks of heart attacks and strokes, so they are quite careful about following our labs.

[Simon Dog]

IIRC samples are taken both before treatment begins and again once finished so labs can make some comparisons to before and after treatments.  I need to remember to ask the Dr about this as I am curious as to what those differences are.

Pre and Post BUN (blood urea nitrogen) are used to calculate the URR (Urea reduction ratio).   The URR is used in an obtuse formula to calculate Kt/V (http://www.medcalc.com/hd.html).

The URR goal for in-center hemo is around 65%, though I got 75% when in center.  The URR goal for home treatment is lower if one is on NxStage doing more than 3 treatments a week.  My URR goal is 40%, but I generally score between 46% and 50%.

Again, I don't know exactly what, only that some of our lab values are not expected to be the same as a more 'normal' none renal patient.

Creatine will be through the roof on a dialysis patient.  Other doctors have received an "urgent call" from the blood lab when they see my creatine and do not know I am a dialysis patient.

[GA_DAWG]

Our clinic does hemoglobin once a week, the transplant center gets a tube every month, and we have the big monthly draw they use to test for phosporus, potassium. Kt/v, calcium and the rest.

[kickingandscreaming]

With PD the blood testing is once/month.  I think it's every 3 or 4  months that they do a clearance test that tells them how good a job the PD is doing.

[Michael Murphy]

I believe the weekly Fresinius test is for hemoglobin.  The best way to see this is have the clinic give you your Medical Record Number (MRN) and go to Fresenius web page and sign up for their portal.  You can see test results next day in most cases.  It’s great to see the results sooner so if there is a problem you can make changes right away.

[Simon Dog]

I believe the weekly Fresinius test is for hemoglobin.  The best way to see this is have the clinic give you your Medical Record Number (MRN) and go to Fresenius web page and sign up for their portal.  You can see test results next day in most cases.  It’s great to see the results sooner so if there is a problem you can make changes right away.

There are two portals - I recommend you get access to both.

Fresenius - Nice graph of recent results, not all lab values displayed

Accumen - More complete lab results, no nice graphs or smiley faces if you reach goal

[kristina]

Hi,
All fairly new to this so I have a few questions. I have looked and searched around the various posts here but found nothing specific (apologies if my search skills are lacking and I am asking questions which have already been answered).

1. What is the difference between GFR and eGFR?
I understand GFR is the 'actual' rate and it is difficult to accurately determine so the eGFR has been developed to give an 'estimate' and it is adjusted depending upon gender, age and race. So,
a. Are the 2 terms interchangeable? Not many seem to distinguish them
b. Is one better than the other when determining the stages of CKD?

2. How do they measure the effectiveness of dialysis (HD or PD)?
Obviously dialysis is not exactly the same as having fully functioning kidneys otherwise there wouldn't be so many diet / fluid restrictions, binder medications, blood monitoring etc.
Logically (I think), a GFR/eGFR should go UP once dialysis is started as it removes creatinine and therefore would change laboratory analysis results. Does it get back above the magic 90 figure?
Is there an 'ideal' range for key parameters to look for? What are these?

3. How often do you need blood tests when on dialysis?
I guess there will be lots when commencing but once you are 'stable', is it normally weekly, monthly, 3 monthly?
For those on HD, can you use blood from your fistula? If yes, which 'side' should you take it from? (arterial or venous)

Thanks for your time

Hello freddagg,
1) like yourself, I also look forward to find out about the difference between eGFR and GFR and would not be surprised if both actually mean the same...
2) The effectiveness of my HD-dialysis-treatment is measured every time (it actually comes up on the dialysis-machine) and the nurses write it down into my file every time and at the end of the month it is all being evaluated by the nephrologist. To my knowledge it is quite satisfactory. I must add here that I strictly adhere to my (vegetarian) diet and fluid-restrictions. The most important point about this is, to make sure to avoid any ready-made-food and cook everything yourself without any salt and without any thirsty-making-spices... That should do the trick !
... I believe that the diet- and fluid-restrictions are also due to the fact that dialysis can be quite "heavy" on our body and because of this it is advisable to keep our body as "happy" as can be with an easy digestible (in my case vegetarian) diet to make absolutely sure that there is nothing there to upset the body.
Furthermore, the fluid-restrictions are due to the fact that whatever fluid one takes in "has to" be "taken out" during dialysis, especially if the kidneys are no longer working. So, if you are drinking too much, it has to be "pulled out" of your body during dialysis and that can be quite strenuous for an already weakened body. So, in short, if you wish to be kind to your body and your future as an dialysis-patient, it is advisable to adhere strictly to the liquid restrictions, your body will be grateful and reward you with more energy, better intellectual concentration and and a little bit more zest to life...
... 3) My own blood tests (taken from my chest-cath) at first before and later after dialysis are being taken once every month and that is because I am adhering strictly to my diet & liquid-restrictions and the doctors know that and check-up accordingly. but, whenever there is a "little hiccup", my blood tests are being taken instantly to check-up by the nurses and the doctor whether or not "things" are still alright.
Next month I have had my "chest-cath" for three years and it has served me very well. It needs great attention whilst showering and I can only "wash" around the chest-cath very carefully with a dampened flannel. Fortunately it has caused me no problems so far (touch wood!!!) and I am extremely grateful for that. Mind you, if you decide on a chest-cath, it needs your absolute determination to keep it completely clean at all times, keep it completely untouched and you have to guard it with your life and make sure no water or anything else comes near it whatsoever.
Good luck-wishes from Kristina.
P.S.    ... all this may sound a bit like a "big job", but once you have positively entered the routine of it all, it hardly needs much thinking and becomes a new way of life ...

[GA_DAWG]

As I have heard doctor's explain it, taking in too much fluid between treatments will also increase the chances of developing cramps. At our clinic, we have two women who sit beside each other. They seem to have some sort of competition as to who  will get off the machine first, so they never make their full time. Tey are now coming in anywhere from 4-6 kg above their dry weight. Both now cramp early in the treatment and ask the tech;s to stop pulling them, amking their weight go up each treatment. One just spent 10 days in the hospital,, where they could control her fluid intake. First day back, her doctor told her they got her back to her dry weight and she should do everything to stay there. Soon as he left, she told the techs to stop pulling fluid. By her second treatment back, she was 4 kgs over. That is a gallon of water.

[kristina]

As I have heard doctor's explain it, taking in too much fluid between treatments will also increase the chances of developing cramps. At our clinic, we have two women who sit beside each other. They seem to have some sort of competition as to who  will get off the machine first, so they never make their full time. Tey are now coming in anywhere from 4-6 kg above their dry weight. Both now cramp early in the treatment and ask the tech;s to stop pulling them, amking their weight go up each treatment. One just spent 10 days in the hospital,, where they could control her fluid intake. First day back, her doctor told her they got her back to her dry weight and she should do everything to stay there. Soon as he left, she told the techs to stop pulling fluid. By her second treatment back, she was 4 kgs over. That is a gallon of water.

Hello GA_DAWG,
Have these two females ever been questioned and/or medically examined about their odd behaviour?
Their attitude towards their own life and their future comes over as if they are determined to end-it-all as soon as possible?
Thanks from Kristina.

[GA_DAWG]

It is strange Kristina. I have noticed almost a resentment at being in dialysis, not just from these two, but from a few others as well. They all have many of the same habits, like being way over dry weight, eating things they know they are not supposed to have, some even right in the chair for the techs and nurses to see. They also seem to have the habit of lying to doctors when they ask them why they get off early, even to the point of blaming it on the techs. We have really good techs and that part kind of makes me mad. I understand, we would all prefer to be someplace else, but I also think we should be thankful we have a problem that can be treated. So many people are in the other boat, with problems that are untreatable.

[Michael Murphy]

When I went to my house in the Adirondacks the first time after starting Dialysys I was shocked to hear the locals debating who missed the most sessions.  This occurred right after I found the Emory app that calculated survival odds for Dialysys patients.  Realizing the odds are not good I came to the conclusion that compliance was the best way to improve my odds.  Here I was suddenly in a group of people proudly announcing that they missed at least one session a month.  This summer it’s still bad up there, so bad the clinic is running a contest on who misses the least and has there sessions shortened the least.  I was so shocked I told the manager of my home clinic she thought I was exaggerating  I then showed her a photo of the contest board and all I can say is she was speechless.

[Simon Dog]

This summer it’s still bad up there, so bad the clinic is running a contest on who misses the least and has there sessions shortened the least.

I wonder what the percentage of people is who never miss a treatment or get off early?

I've been on D for 5.5 years, .5 PD, 5 Hemo.   I've never missed a treatment or terminated early except for a medical/machine related problem.  There were two times I terminated a NxStage treatment early due to machine issues, and I reported it to my RN immediately in case she wanted me to make up the time.   Until I saw your post, I assumed this behavior was the norm rather than the exception.

As I have heard doctor's explain it, taking in too much fluid between treatments will also increase the chances of developing cramps.

Taking in more fluid won't increase the chances of cramps, but removing it will.

I have not had a single cramp since being on NxStage 5 days/week.  Not one.

[kristina]

It is strange Kristina. I have noticed almost a resentment at being in dialysis, not just from these two, but from a few others as well. They all have many of the same habits, like being way over dry weight, eating things they know they are not supposed to have, some even right in the chair for the techs and nurses to see. They also seem to have the habit of lying to doctors when they ask them why they get off early, even to the point of blaming it on the techs. We have really good techs and that part kind of makes me mad. I understand, we would all prefer to be someplace else, but I also think we should be thankful we have a problem that can be treated. So many people are in the other boat, with problems that are untreatable.

Hello again,
i feel very sorry for their resentment about their dialysis-treatment and it sounds very sad ! I do hope they come to their senses!
You are quite right, we all prefer to be someplace else, but at least we are being treated, whereas there are so many people in the other boat with untreatable diseases. Of course, we have to travel three times every week to our treatment and stay there for hours, but for the rest of the week we can do as we like and as long as we adhere to our kidney-friendly diet and liquid-restriction, we are not doing too badly...
Next month I have been on hemo-in-center-dialysis for three years. When I started, my kidney function was about 4 % and today my "two little fighters" are still functioning about 3-4% and I am very grateful for it. I also eat every day 3-4 asparagus, which I "peel" before cooking (to drain the potassium out during cooking in plenty of water) and I also drink every day the juice of half a lime with a little water, because a little asparagus and half a lime "inspire" kidney function for as long as is possible. I also continue to eat my kidney-friendly vegetarian diet and hopefully my "two little fighters" continue with their good work for as long as is possible...
I send you my best wishes and good luck from Kristina.

[iolaire]

December 2013 - July 2017 I missed one treatment because it looked like it was going to snow bad and my wife didn't want me on the roads.  It didn't snow so bad that night but over the weekend it did snow bad and they didn't plow the court's parking lots so I had to get a neighbor to drive me to the clinic.  I should have vetoed my wife because even if it did snow bad I could have gotten home and its best to be treated before the snowstorm rather than worry about when you will get treatment next...  I did do numerous treatments a day early or a day late to fit travel schedules (keeping the treatment before of after on my normal schedule) but I am lucky enough to not have side effects to make that stupid...

I can help but think being compliant helped keep my lifestyle normal.

[Simon Dog]

People in the US on dialysis should feel gratitude, not resentment.

In many parts of the world dialysis is available on a "how much can you afford?" basis or, because of limited facilities, only the bare minimum necessary to keep you from dying this week (think 2 treatments a week) is available.   In this country, people of any socioeconomic status get a full dialysis schedule, specialty consults, and high tech equipment.

Sure, we still have wallet biopsies for a transplant, but we're still way ahead of much of the world in terms of access.

[Michael Murphy]

Personally I never miss and have a 4 wheel drive suv just so I can go.  I take back roads to avoid the morons in the suv who think they can go as fast as they want cause they are in 4 wheel drive.  The problem is they can, what they can’t do is stop.

[Charlie B53]

I about qwap when I hear of someone coming in 4 K or more over.  Then I came in at 3.7   SHOCKED to say the least.  Tech and I figured it out.  Ate Chinese over the weekend.  Wanna bet that don't happen again?

I do have to admit to missing one session.  I was sick enough I didn't know which end to point into the toilet.  My chair at the clinic is way too far from the bathroom.  I didn't want to try it.  By Friday's weigh in I was 3.4 UNDER weight.  Nothing to take off there!

[kristina]

Personally I never miss and have a 4 wheel drive suv just so I can go.  I take back roads to avoid the morons in the suv who think they can go as fast as they want cause they are in 4 wheel drive.  The problem is they can, what they can’t do is stop.

I have not missed any dialysis-session either and shall try hard to make sure it stays that way...
We also come across similar problems when driving to, or returning from, the Dialysis-center. There are some strange drivers around and they do not seem to realize that there are other drivers on the road as well and we are always on the alert to avoid accidents with them!!! For example, we were driving at a normal speed and the person in front of us suddenly screachingly stopped his car in the middle of the road, stayed like this until he found his route on his computer... and meanwhile the traffic around him had to stop as well, on both sides, because no one could pass his vehicle which was suddenly parked in the middle of the road...There is no thought about other road-users to be noticed (sometimes I wonder if they actually have a valid driving licence?) ... Or another, more common problem is, that most drivers, for some mysterious reason, seem to have no idea where they are driving to and seem to be "glued" to their computer in front of them in their car. They are so involved with their computer, that they don't react when the traffic lights show "green" and so it comes that the whole traffic only moves forward when the traffic light shows "green" for the second time. But what really concerns me most of all is when some of them drive at high speed, whilst reading their computer at the same time  ...
Let's just hope we have a chance to survive it all ...

[GA_DAWG]

Nothing makes me less happy than the person who sits at the green light because they are on the phone or texting, so I agree Kristina. I also do not want to come off as holier than thou. I know how hard it is to stick to diet and fluid restrictions, and I am lucky because I still have some residual function. But when a doctor stands and explains to you that one of these times you will not make it to the hospital for them to bring you back down, and still you do not listen, then try to blame the techs, it does not sit well. We really and truly have a great group of techs, and nurses. They deserve better, especially when they try to get someone to stay on the machine and get cussed out for the effort. We have another guy who will do no more than two hours, because he needs to go outside to smoke. Another takes a weekly ambulance ride because she gets money from AFLAC for it.