Signs indicating Dialysis

Hello Dr.

I am in the place now where my IGA nephrpathy has progressed, GFR is now 10 and creatinine is 6, up from 3 in a month. I think that by the numbers, I should probably be considering diaysis options and preparing myself, but I dont seem to have any symptoms related to someone at Stage V. My nephr reviewed the various symptoms that I would normally be feeling at this level, but I dont. Yes, there is some fatigue and some edmea, foaming urine, but thats it. I guess the question is when is it time to start dialysis, does one go strictly by the numbers, the symptoms or both? My neph is advising PD and I am in agreement, as I would like the most freedom as possible.

I appreciate your thoughts


Dear Jeff

Before the era of dialysis, and kidney failure progressed through a chain of symptoms to inevitable death, a symptom complex (or group of symptoms) commonly described the journey that patients took. It may have been some these that your doctor described. Nowadays, however, with dialysis (or pre-emptive transplantation) as the usual course for most people, we commonly do not like to see a patient becoming particularly unwell or sick as a result of their kidney failure but, rather, we begin dialysis, whether haemodialysis or peritoneal dialysis, before any major or significant symptoms of illness occur.

For most people, this means starting dialysis somewhere around a GFR of 8 to 10 ml/min. We know that at this low level of GFR, more significant symptoms are just around the corner. In addition, biochemical and fluid changes begin to exert ever increasing stresses on the body at low levels of GFR and it is best to try and avoid some of these problems if possible.

There is a study currently being conducted in Australia (indeed has just concluded and its results are soon to be released) called the IDEAL trial. This stands for Initiation of Dialysis EArly or Late. This trial was conducted exactly for the reason that we still do not know whether haemodialysis (and it was a hameodialysis trial) should start earlier or later. Provided they were still well in themselves, half the patients in this trial (intentionally) started dialysis with a GFR between 5 - 8 (= Late). The other half started their dialysis (intentionally) at a GFR of 10 to 12 (= Early). Which is best? Hopefully the trial will help us find out. It is a question that has never really been answered until (hopefully) now.

Particularly for haemodialysis, good, early preparation – and by this I mean not only full (and all) modality choice discussion, education and demonstration but, most importantly of all, AVF creation – is absolutely essential. An AVF needs to be created some months prior to its intended use and should be put in, when haemodialysis is anticipated as the chosen modality, when the eGFR dips below 20. It doesn’t matter if it sits there, for months or even a year or two, unused. It does no harm – at least of any significance – and it has plenty of time to mature so that it is ready to use when needed.

Admittedly,for some patients, if kidney failure is sudden, acute, or unexpected, there may be little or no time to prepare for dialysis. Others, like the ostrich, prefer to keep their head buried deep in the sand and ignore or resist their impending renal replacement therapy. For these patients, one does the best one can with what one has. It often means an unhappy start to dialysis or, certainly, an ill-prepared one, and usually results in catheter access as a last resort. THis is always the lesser choice. Most patients, however, have a predicted and slower course to end-stage kidney failure and full preparation (and decision-making) is therefore possible.

For PD, there clearly is not the same preparation lead-time. A Tenckhoff catheter can be inserted when the time is right, and dialysis begun nearly straight away. We tend to like to put our TC’s in a couple of weeks before we use them to ensure that the catheter ‘beds in’ and the risk of leakage is minimised but, essentially, it is " insert and go".

One thing that I find people do not really well understand is the lack of symptoms. If you have something wrong with your heart, you will likely go to your doctor complaining of pains in the chest, shortness of breath, palpitations or some other feature that draws attention to the heart as the likely cause. If there is something wrong with the lungs, there is cough, breathlessness, the production of sputum – or some other symptoms that alerts both the patient and doctor to the presence of lung disease.

But … if the kidneys fail, nothing much happens.

People may complain of tiredness or lassitude, perhaps easy fatigability – but so do I, commonly, and especially after the staying up late at night to write these responses! These are symptoms that we all complain of from time to time and they hardly draw our attention or the attention of doctors to advancing and near end-stage kidney disease. Pain is uncommon with kidney disease. Itch and night-time cramps or loss of appetite, taste appreciation and the enjoyment of food may occur, but these are often ascribed to other causes – and things like cramp occur in normal people too. Most of the symptoms of kidney failure, prior to the need for dialysis, are those of the associated anaemia. Not much happens on the kidney side.

It can therefore be a surprise and shock to be told that dialysis is imminent. How could that be? I feel fine! There’s nothing wrong with me that a holiday won’t fix. Certainly, not major organ failure! That’s why kidney failure is often called the silent disease or the silent killer. Most people don’t know they have it until it is upon them.

I describe it this way to my patients …

Imagine you are blindfolded. You are walking, ever closer to a cliff. You do not know the cliff is there – but it is. You have little warning and there is nothing to alert you, perhaps apart from a slight breeze in your face. The going is easy. Nothing much is happening. It seems an easy walk … … … until that last step hurtles you over the edge. If that happens, we have to call the SES (State Emergency Service) to haul you back up again with stretchers and guerneys and a helicopter hovering offshore. In other words, a bit of a business!

The art – and there is art left in medicine – is to permit you to get reasonably close to the edge of the cliff but not to allow you to fall off.

There is no need to start dialysis back when you are ‘miles from the edge of that cliff’ – ie: when your eGFR is 50, or 40, or 20, or even (in many) until the eGFR has dropped below 10. You will still be on " flat ground" but by an eGFR of 10(ish), you are indeed getting uncomfortably close to the edge of that cliff. It’s time to turn you around. You’ve managed under your own steam until now but now it is time to intervene. We know from experience that most people begin to risk more significant ill health and/or significant other organs stress (which could be avoided) if the eGFR is allowed to drift too far down.

Here, a word about eGFR. It is not the be all and end all measurement that some think it to be. It’s a fluffy number. It is not all that accurate – though we would like to think it is – and should not be used as the sole determinant of a patient’s progress. It is one measure, but not the only measure.

Having said that, young people (especially) can often tolerate their end stage renal failure symptoms (or lack of them) to eGFR’s of 5 to 8 before really beginning to feel the pinch. I tend to use a combination of numbers – eGFR, creatinine, phosphate, calcium, degree of anaemia, BP control, symptoms of breathing and fluid retention, appetite and weight change (up or down) … a range of things … in combination with a simple " how are you feeling?"

OK, I hear you say that ‘there is little science in that’, but that’s when judgement comes to bear.

So, no, it’s not just numbers. Its numbers, a sense that the patient is beginning to struggle a little, perhaps some symptoms – though relatively mild still – and that old-fashioned non-scientific sense that ‘now is the time’. Experience helps as well.

Finally, either the basic disease or any associated co-morbidities (other things wrong beyond the kidney disease) often play a role. For example, I tend to put diabetics ‘on’ a little earlier than I would somebody with single organ kidney disease and no other problems. People with heart trouble will commonly struggle when the eGFR diminishes down below 10 or 12 (and occasionally even earlier in the course of their renal impairment). They may need earlier dialysis than others. As I continually say at this site, every patient is an individual. Every patient must be assessed on their merits as an individual. What can be left for a while in some, cannot be in others.

I don’t know whether that’s helped you.

John Agar

Dr John -

Thank you for your thoughtful reply and words of advice. That makes more sense to me and better explained than I have heard before.



I am relieved to finally find someone who understands this disease. Iam 70 yo, have stage 4 CKD with a 23 GFR and 2.1 creatine. I also have COPD, diabetes (for past 8 yearrs) and coronary artery disease and mitral valve regurgetation and pulmonary hypertension as well as ordinary hypertension.I do not use inhalers or insulin.

Currently there have been changes in my blood… acidosis forwhich I’m on a twice a day doses of sodium bicarb. then 20 mg of lasix type Rx to help rid me of the edema. I huff and puff just going from the house to the mail box. I’ve gained 14 lbs in 3 months. My BP is stable at 149/73, my blood sugar at 144. I feel emotionally rocky… very anxious, nail picking/biting type, but not enough to use Rx.

I gues I’m concerned as to whether a FAV is around the corner. The only preparation I’ve been given is to not let anymore blood draws out of my left arm.

It is helpful to hear that the decision to do dialysis is based on many factors not just numbers. I think it’s only in the past 4 months that there are more symptoms that my kidney is ill. The acid, the calcium deficincy, the elevatd potassium.
Last week the ultrasound could not see a left kidney… suggestion by radiologist is that it shrieveled… no comment on the remaining kidney.

These days I don’t like feeling anxious, but I understand with sleep problems the norm, it’s not unusual to have anxiety.

Please feel free to respond.

God bless us all,

emjay (

Oops … I missed your post. So sorry to be tardy! I will write back tomorrow (22/2/10) with a reply

John Agar

Dear emjay

I am sorry that I missed your original post – better late than never!

You certainly have a lot to handle … stage 4 CKD, diabetes, chronic obstructive lung disease, coronary artery disease, a leaky mitral valve, ‘ordinary’ systemic hypertension and pulmonary hypertension (an elevated pressure in the pulmonary artery = the artery that takes blood from the right side of the heart to the lungs and in the lung circulation).

You mentioned ‘acidosis’. A low grade (and occasionally though rarely severe) ‘metabolic’ acidosis is a common background feature of CKD and it is often very difficult to treat though at face value, the treatment seems simple – sodium bicarbonate (in other words, mothers’ baking soda) wrapped in a gelatin capsule to make it palatable.

It seems such an innocuous treatment but, sometimes, it is not!

The problem is that although the bicarbonate is an alkali (or base) which, if you think back to your high school chemistry, neutralises acid, the bicarbonate is linked to sodium as sodium bicarbonate. It is the sodium content that causes trouble.

Where goes sodium, goes water! Giving you an obligatory sodium load by administering sodium bicarbonate (so seemingly innocuous) will mean that you will tend to retain water as well. This will increase your blood volume, it will elevate your blood pressure, it will increase your pulmonary hypertension, it will promote oedema – it will have a range of (potentially) adverse effects which can be counter-productive for you as we try to reverse the acidosis.

In patients with hypertension, fluid overload, ‘dicky’ hearts and ‘dicky’ lungs, (‘dicky’ is an Oz-ism for ‘not-so-stable-and-not-too-healthy) – all the things you have mentioned – it ends up being a judgement call as to which is going to cause the more trouble … the sodium overload from sodium bicarbonate and all the problems the sodium load can induce – or the acidosis.

Though chronic acidosis affects bones and a variety of other body systems, many of those effects are rather more subliminal and less immediate, acute, and dare I say it, important, than the effects of sodium overload (expressed as circulatory volume overload) on the heart and the circulation and the symptoms this provokes. Though I would never suggest ignoring the acidosis in CKD if it can be treated, in practical situations we often must do so as, by attempting to correct the acidosis, we can induce far greater problems and cause more difficulties than the acidosis was causing (or would ever cause) of itself.

You say you are are ‘puffing and panting’ and having to take diuretics to counteract the fluid accumulation. Though these may be in part due to underlying heart and lung disease, they may also be due (at least in part) to chronic sodium overload. This needs to be discussed with your doctor. I simply cannot, from this distance, determine which. However, it might be worth considering stopping the sodium bicarbonate (though only with the approval of and after discussion with your doctor as only he/she is best placed to judge the relative importance of the two competing issues) … as, again, I do not know and cannot tell how severe the acidosis has been. Only your team and doctor can determine which is playing the more significant role.

As for an ’AVF’ around the corner? … as your eGFR is in the low 20s, you have a single kidney and you have a list of other problems at the tender age of 70, it is likely that your kidney disease will continue to progress and I am afraid that supportive dialysis may well be looming.

Again, I am not really in a position to make a judgement call as to how soon this might be but, certainly, you are doing the right thing by protecting your left arm. As you are diabetic – and this sometimes has implications for the size and nature of the blood vessels that would be used to form an AVF – earlier rather than later assessment (at least with vein mapping) is probably wise as it will give your surgeon time to mull over the best pla of attack to ensure a good AVF is timely made. Maybe this is a step that will be needed fairly soon.

I hope this has been of some help and, again, my apologies for the missing your post.

John Agar

Apologies to any readers - I incorrectly posted a response to another’s question here … it has now been withdrawn and re-posted in the correct place.

John Agar