Why so often?

[WfMonkey]

There is one thing I can't figure out, and no matter how much I read I never seem to come across the answer. Why is it that you can keep going for months at stage 5 CKD with no KRT treatment, then when you start dialysis you need to go on 6 times a week? If my GFR is 12 today and I start dialysis, won't it be 12 tomorrow still? Don't I need just a little bit of help an not a full time regimen? It seems like D is all or nothing - why don't people start with D once a month, then increase frequency as kidney function declines? Other than fatigue and headache, I feel pretty good most days. Can't I just have one session of D to help me along?

I'm really scared of being tied.to a machine and I'm going to wait until the last possible moment to start D. I know I will be really sick by then. If I could do one session to test it out without commitiing to 6 days a week for the rest of my life, I would probably start now...

[boswife]

oh lordy am i ever with ya on that!!  Concencis sais more is better, but i think that for hubby, he only needed a little help and im afraid the 'more' is going to kill his kidney function all together so i'd really like to know the answer to this as well.  We are going 6 slower days so i dont feel like im 'hurting' him, but the 3 fast days incenter bugged me. 

[texasstyle]

I'm guessing  partly because each person's body responds differently to kidney disease. For some, a GFR of 25 may have the m full of severe edema and fluid build up around the heart. For others, they may not have that problem. The same with the Uric acid build up..everyone differently. I believe the stanadrd is 3x a week. 6 Hmm.. The human body is so complicated. It's not just about the "kidneys" themselves, but how everything else is effected too.  Some people miight get one session, but if you're at a GFR of 12 that means you can say you have pretty much no kidney function. The headaches are a good sign that you have hypertension which alone is damaging.Being tired is the posions building up. Kidneys work every miute 24-7. Going 3 hours a week isn't enough. I'm still confused about the 6 days. did Imiss something? lol  Hold your head high and make each day  the best it can be!

[WfMonkey]

Everyone on NX stage talks about 6 days a week, and PD is every day, right?

I am struggling with blood pressure lately, been running around 165/95. Will D reduce that?

[texasstyle]

I am used to always thinking od dialysis as in center hemo..duh lol. Most people do the PD at night & not knowing an awfullot about NXStage, it probably is 6 days a week. I was thrown off by "need" to do 6 days a week. That would be for NXstage apprently. What ever type you choose I'm hoping it works best for you. There's a livin to do and I know you wanna do it feeling you're best.

[malaka]

I can't speak to Nx Stage, but the problem with all dialysis is that is comes nowhere near replacing 100% of normal kidney function of filtration.  HD is the equivalent of high pressure, PD like low pressure.  Thus most HD at least in the USA iss 3x per week for about 4 hours per session.  PD is done continuously, more or less, but as the solution fills with junk, its less effective.  Thus the need for frequent replacement -- out with the old, in with the new. 

IF your GFR is 12 today, it probably will be 12 tomorrow.  But that's getting to be pretty low function.  And the toxins build up.  Diabetics often start dialysis around 15 GFR on average. 

Me?  Not quite there yet, but expect to be soon.  Thus the hours spend studying nephrology sites, texts, journal articles, etc., about my disease (idiopathic membranous nephritis) and its progress. 

When to start dialysis isn't an exact science, you know, and does depend on things like control of nephrotic syndrome, fluid in pericardial sac, etc.  I can't, for instance, keep increasing my Lasix dosage forever. 

I'm not a doctor, either, so this ain't real medical advice.  I'm just condensing what I've read and translating it from Medicalspeak to English.

[jbeany]

There is one thing I can't figure out, and no matter how much I read I never seem to come across the answer. Why is it that you can keep going for months at stage 5 CKD with no KRT treatment, then when you start dialysis you need to go on 6 times a week? If my GFR is 12 today and I start dialysis, won't it be 12 tomorrow still? Don't I need just a little bit of help an not a full time regimen? It seems like D is all or nothing - why don't people start with D once a month, then increase frequency as kidney function declines? Other than fatigue and headache, I feel pretty good most days. Can't I just have one session of D to help me along?

I'm really scared of being tied.to a machine and I'm going to wait until the last possible moment to start D. I know I will be really sick by then. If I could do one session to test it out without commitiing to 6 days a week for the rest of my life, I would probably start now...

Yup, you're right - your kidney function is going to be pretty much the same the day after you start.  The point of starting, however, is because your function is low enough that the toxin level will build up to fatal amounts if you don't get treatment started within the next few months.  Ideally, you start before you need to be hospitalized, and while you still have enough energy to cope with the adjustment period that comes with the first month.  You are going to do a lot of cramping and crashing at the beginning as they work out your real dry weight, and figure out what the treatments will do to your blood pressure.  You may need to adjust medication levels.  You may have to cut short your initial treatments because of allergic reactions to meds, filters, etc.  If you waited until the very last possible second to start - the adjustment period could be fatal.  You wouldn't be strong enough to cope with the physical stress, let alone the mental. 
Also, the rate of an individual's kidney failure is completely unpredictable.  You could chug along at 15% for several years - and then drop drastically within a week or two.  You could have some kind of reaction to a medication that kills function, or it could be a natural process.  If you aren't already on D at that point - you may not survive long enough to get started. 

[texasstyle]

some great points Jbeany!

[RichardMEL]

jbeany pretty much said what I wanted to say.

The toxins are the important thing. The whole reason to start D is that the kidneys aren't removing enough of them in the first place, so if you stop they'll build up at a faster rate than any residual function will take out, and then you'll be in trouble (and it will compound over time, and accelerate as the toxins mount up).

The other thing is that dialysis acts as a kind of crutch to your natural kidneys. Some kidneys, I understand, can then get "lazy" and slacken off once D has started such that if you did stop, you might be 12 for a few days, but it would probably decrease rather rapidly as the crutch is taken away and the natural kidneys may not get back to where they were at before starting.

At the end of the day NO nephrologist wants to put ANYONE on dialysis - it's an absolute last resort - so if you're told it's time, it most probably is, or is very close to it.

[boswife]

At the end of the day NO nephrologist wants to put ANYONE on dialysis - it's an absolute last resort - so if you're told it's time, it most probably is, or is very close to it.

I appreciate you writting  this and am embarrased to say I need constant reminder of it.. 

[Jie]

In some countries, when the pateints need to pay part or all cost of dialysis, one can start once a week or twice a week until reaching a point that more are needed. I think in the U.S. and many free medicine countries, this may have something to do with insurances as well as Medicare too. In the U.S., it seems that the charges are not related to the cost generated by the individual patients. The charges are based on insurances. If one just does once a week, I am not sure how they will charge the insurances. For PD, patients can adjust how much they do each day. However, they are still charged the same no matter how much they do.   

[rsudock]

I am only speaking blood pressure from a hemo D perspecitve...but it seems many folks combat high blood pressure while on D, but it seems like blood pressure is better controled on daily or nocternal hemo dialysis. When I first started D I was having a hard time with my bp (200s over 100s) but now with Norvasc and watching the fluid my blood pressure is always 130s overs 80s and lower. Not perfect but much better....

xo,
R

[texasstyle]

About the kidneys-dialysis-blood pressure... (and I need some help from someone here lol), but I believe it is a horomone that healthy kidneys produce that help keep your blood pressure in check, and then having a healthy normal blood pressure helps keep fluid control.  I think before starting dialysis, many people (or most) had some very hypertesion, if not severe. For my husband at least, dialysis helped to bring that down along with a BP med. He is on hemo. I have been learning over time how much the kidneys are responsible for. I was also suprised to learn they produce a horomone that stimulates the production of your red blood cells. When I first came here, I thought the kidneys only  "filtered things".

[Bruno]

I think the first thing to be aware of is that everybody is different (my first bit of advice at home training). In my case dialysis produced the following benefits 1) My blood pressure returned to normal levels and I cut out most blood pressure medications 2)I notice that before a session with a high fluid removal goal (say 3 kg=3 litres) my blood pressure is high (150 plus) but after the session with the fluid removed it is back to normal.
The relationship between excessive fluid in the blood and high blood pressure is obvious...the heart has to work harder to move your normal blood (5 litres) plus 3 litres your kidneys can't get rid of.
The problem is that you go on dialysis because your kidneys are no longer coping, often your urinary function is good but your bloodstream is full of toxins and poisions. Do not take the fact that you are still urinating as a sign that you do not need dialysis, that is simply untrue. You can be pissing like a draught horse.
 and still be accumulating excess fluid.
Wish as you might, once your kidneys are gone and you need dialysis one day a week is never going to do it.
Your kidneys were working (when they were healthy) 24 hours a day, 7 days a week so once they are gone 3 sessions of 5 hours weekly are a minimal substitute.
Sorry to be a bastard, but them's the facts.

[kellyt]

This is the thing I love my pre-transplant nephrology the most for.  He was very careful with not wanting to put me on too early, but definitely not wanting to wait too long.  He was very thorough with labs, but mostly he went with just how I felt (which was good for the most part).  He rocked in that area!  Good luck staying off D for as long as possible!!   

[WfMonkey]

How often were you having labs done prior to starting dialysis? I'm currently seeing my nephrologist every two months, but from Feb to April my GFR dropped from 21 to 13. I'm worried that it may be below 10 by now, although I have no visible edema my blood pressure keeps going up and I have some shortness of breath. Plus I've had a headache for two months...

[M3Riddler]

There is one thing I can't figure out, and no matter how much I read I never seem to come across the answer. Why is it that you can keep going for months at stage 5 CKD with no KRT treatment, then when you start dialysis you need to go on 6 times a week? If my GFR is 12 today and I start dialysis, won't it be 12 tomorrow still? Don't I need just a little bit of help an not a full time regimen? It seems like D is all or nothing - why don't people start with D once a month, then increase frequency as kidney function declines? Other than fatigue and headache, I feel pretty good most days. Can't I just have one session of D to help me along?

I'm really scared of being tied.to a machine and I'm going to wait until the last possible moment to start D. I know I will be really sick by then. If I could do one session to test it out without commitiing to 6 days a week for the rest of my life, I would probably start now...

WFmonkey,

The rate of kidney failure depends on the reason why your kindeys are failing. some have genetic disorders, some have diabetes, some people abuse drugs, and others develop other diseases.  When you go in for dialysis, it is not a long term fix. The second you are off the dialysis machine, the toxins start to build up in your bloodstream again from diet along with normal body processes.
If you measure your GFR directly when you come off dialysis, yes, it will be higher, BUT, this is somewhat to be artiificial since your kidneys may not be working..... 
Kidneys work 24/7... Dialysis works only as long as you are on the machine...

Regarding your other post about labs.... If your kidney function is continually deteriating, then you should be in the process of learning about dialysis. You should be referred to a nephrologist and he/she should be giving you options of all the types of dialysis along with teaching you about each. You should also be speaking to a Renal Dietition.  This differs greatley from a regular dietition.  A renal dietition is trained specifically for those on dialysis and kidney failure. It Does Make A Difference...

In my own opinion, you should be seeing your nephrologist more than once every two months. With a GFR of 12, you should already be in the planning stages of dialysis since you are starting to feel the symptoms.  The headache is more than likely due to a high creatinine and/or BUN and other toxins that the kidneys are not removing.

One suggestion is to take control of your treatment. Do not wait until your Dr. comes to you.  You should be discussion what type of dialysis getting prepared with either a fistula or PD catheter if you go that route....  It takes time for a PD Catheter and Fistula to mature.

Start learning online about dialysis. Ask others.....Ask about home dialysis . This will let you keep your life much more normal than if you were to go in-center.  But this is a whole other story about home vs in-center dialysis...

///M3R

[WfMonkey]

M3R,

Thanks for the advice. I have been quite hands on with my treatment - I have been seeing nephrologists both sides of the Atlantic, have seen FSGS specialists and applied for clinical trials. I am in the process of getting a transplant organized, but am constantly amazed by how nobody is in a rush...perhaps I'm not the only person with kidney disease...

I have FSGS and paid a fortune to get genetic testing done. I'm positive for a recessive gene, which the FSGS specialist thinks this does not indicate that the disease is inherited, although we discovered yesterday that my brother, who is getting worked up for donation, has significant proteinuria.

Back to the original subject, it still doesn't make sense to me that someone with 10% of their kidney function needs the same amount of dialysis as someone with zero kidney function. Why doesn't dialysis start out as a supplement to your kidneys? It just seems like an all or nothing solution.

[Marina]

One  of  the  reasons  some   Drs   want  patients  to  start dialysis  earlier  is  because  they  can  maintain  the  residual   kidney  function. 
Of  course,   on  Hemo you lose  your   residual kidney  function faster than  you  do  on PD.
The reason  for that  is  that  the  amount  of  fluid  that  is  removed  such  high  rates  in  such  a  short  amount  of  time, that  B/P  ends up  crashing.    When  B/P  crashes  it  prevents  blood  flow to the  kidneys.  If  there’s  no  blood  flow  the  kidneys  suffer  more  damage.   
I  started  PD  when  GFR  was  between  13-15%      After  6 ½  yrs  later  I  still had  8%  function  left.
While  most  HD  patients  lost  all function  within a  yr  or less  after  starting  treatment. 

My  B/P  pre-dialysis  was in  the  140’s    a  month  after I  started  PD,  I  was  taken  off  all  B/P  meds.
To  answer  your  question   WfMonkey ,  why  not  start  dialysis  once/ month  and then  increase  it  as  kidney function  decreases,  is  due  to  insurance  not  wanting  to  pay  until a  patient  is  stage  5,  and  in  dire need  of  dialysis.   Also  they  will only  pay  for  3x/week for  in-center.      Six times/week  if you  do home  hemo.


 

[Jie]

One  of  the  reasons  some   Drs   want  patients  to  start dialysis  earlier  is  because  they  can  maintain  the  residual   kidney  function. 
 

Dialysis will not maintain the residual kidney function. In fact, dialysis increases the rate of residual kidney function decline.

[Marina]

Dialysis will not maintain the residual kidney function. In fact, dialysis increases the rate of residual kidney function decline.

I  hate  to differ with you, but  a   a great  majority  of  PD  patients  in  my  unit  RETAINED  most  of their  residual  kidney  function.   For  HD  patients  was  a different  story.   
I   still had  8%  at time  of  Transplant,  which  was  6 ½   yrs  after  I  began  PD.

[Jie]

Dialysis will not maintain the residual kidney function. In fact, dialysis increases the rate of residual kidney function decline.

I  hate  to differ with you, but  a   a great  majority  of  PD  patients  in  my  unit  RETAINED  most  of their  residual  kidney  function.   For  HD  patients  was  a different  story.   
I   still had  8%  at time  of  Transplant,  which  was  6 ½   yrs  after  I  began  PD.

PD, especially with manual exchanges, can maintain urine ourput for a long time. But this does not equal to maintaining residual kidney functions. The 24 hr urine clearance test greatly overestimates residual kidney function when one has a kidney function of 0-30%. When one is on PD, I have not heard that any clinic will use the accurate methods to measure residual kidney functions. Almost every clinic uses the 24 hr urine clearance to estimate the residual kidney functions, which makes the clinic looks good because this overestimate can make it easy to reach the target of Kt/V. Many neph still use the 24 hr clearance as kidney functions, resulting in delays of starting transplant evaluation and getting on the list for patients.

[M3Riddler]

Back to the original subject, it still doesn't make sense to me that someone with 10% of their kidney function needs the same amount of dialysis as someone with zero kidney function. Why doesn't dialysis start out as a supplement to your kidneys? It just seems like an all or nothing solution.

Dialysis is not a cure for kidney disease, it is just a treatment method, so the second you stop dialyzing....then the toxins start to build up.  10% function is not alot... Again, it depends on what condition you have to determines how long your kidneys will lasdt.
Normal Kidneys work 24/7.....dialysis is only for the length of time you are on the machine, therefore you would never get total optimal dialysis.
It cannot be a supplement due to this. You are only cleaning that blood at that moment in time.. A normal kidney cleans and filters 24/7..As the function goes down, then so does the quality of toxin removal and other functions the kidneys perform such as helping in the production of red blood cells.

///M3R

[Marina]

Dialysis will not maintain the residual kidney function. In fact, dialysis increases the rate of residual kidney function decline.

I  hate  to differ with you, but  a   a great  majority  of  PD  patients  in  my  unit  RETAINED  most  of their  residual  kidney  function.   For  HD  patients  was  a different  story.   
I   still had  8%  at time  of  Transplant,  which  was  6 ½   yrs  after  I  began  PD.

PD, especially with manual exchanges, can maintain urine ourput for a long time. But this does not equal to maintaining residual kidney functions. The 24 hr urine clearance test greatly overestimates residual kidney function when one has a kidney function of 0-30%. When one is on PD, I have not heard that any clinic will use the accurate methods to measure residual kidney functions. Almost every clinic uses the 24 hr urine clearance to estimate the residual kidney functions, which makes the clinic looks good because this overestimate can make it easy to reach the target of Kt/V. Many neph still use the 24 hr clearance as kidney functions, resulting in delays of starting transplant evaluation and getting on the list for patients.

My clinic  used   blood  tests  monthly  and  a 24hr  urine  collection  every three  months.
For  a  Kt/V,  urine,  blood  and   80cc of  "outflow"  dialysate  were  used  which was  done every  3 months.

[Des]

M3R,

Back to the original subject, it still doesn't make sense to me that someone with 10% of their kidney function needs the same amount of dialysis as someone with zero kidney function. Why doesn't dialysis start out as a supplement to your kidneys? It just seems like an all or nothing solution.

When on HD every single pasient in our unit gets different "types" of treatment although most of us are on either 3 or 4 hour sessions.
for example the dude across from me is on 4 hours (same as me ) but his filter is a higher setting  (to suit his lower function)(fx 100 for me fx 800 for him) and his liquid is different and his clearance settings and pumpspeed is different.

So what I am trying to say is that the treatments differ depending on your kidney function although the time spent on the machine is the same.
 
So they do give different treatment depending on your function. I assume it will be the same for PD an Nxstage???