How dangerous is the initiation of dialysis?

A year ago, I was approved for the transplant waiting list, and I signed up for consideration of extended criteria donor kidneys. I don’t know if these kinds of kidneys are used in Australia, but I am assuming you know about these extended criteria, so I won’t babble an explanation.

I have already received 3 calls about an ECD kidney maybe being available. Each kidney was deemed ECD for different reasons, all explained to me at the time of the call. My tx center has been good about giving me plenty of information, even supplying me with a list of questions to ask during such calls. I have not yet had to make a decision because each time, the kidney ended up going to someone else.

But this does raise a question for me. I am already 54 years old, but I am in good health despite my severe CKD. I have not yet started dialysis, but with an egfr of 16, I’m headed that way; I’ve staved off dialysis so far for two years despite having an egfr of less than 20. I can’t even hazard a guess as to when I may actually have to start.

How dangerous is the initiation of dialysis? If I have the opportunity to have a pre-emptive transplant but with an ECD kidney, is that a safer road than allowing myself to have to start dialysis while waiting for a “standard” kidney? I know this is a difficult question; that’s why I’m asking it! ha. I do NOT expect you to make this decision for me, but I would appreciate your thoughts on how “dangerous” the actual beginning of dialysis really is. I have read that the first year on D is the most difficult and the one that poses the most risks, and I am wondering if I should try to avoid it at all costs if given the opportunity.

Thank you for your thoughts.

Dangerous? … my goodness! Why?

I am intrigued why you might think that … or where you may have gotten the idea that initiating dialysis might be dangerous.

To me, it’s an odd thought, and in all my 4 decades of dialysis experience, I have never once thought of the initiation of dialysis as being ‘dangerous’! Maybe I have misread the understandable fears of patients commencing dialysis - for there is fear … and anxiety … but I had never thought to consider danger.


You are young (54) and in good health (I think) beyond your failing kidneys, and your eGFR (16) says to me you are still a bit of a way from the need for (any) form of renal replacement therapy (RRT).

You have held an eGFR of <20 (currently @ 16) for more than 2 years (= not an unusual scenario) and you are right that neither you (nor I) ‘can hazard a guess as to when you might need RRT’.

You says that … “a year ago, I was approved for the transplant waiting list, and I signed up for consideration of extended criteria donor kidneys” … but, while you seem to be on the waiting list for an extended criteria kidney (you have turned down 3 offers already), this must be under a different ‘rule’ system than is in place here in Australia.

Here, pre-emptive transplantation (getting a donor kidney before dialysis is initiated) can be offered to those with an identified and suitable living donor but cannot be offered when there is no living donor available and the recipient is dependent on a deceased donor (DD) … transplantation is only undertaken prior to transplantation in the situation of a living, but not a deceased donor.

For the latter - a deceased donor kidney - the intended recipient must already be on dialysis: in other words, in Australia, a recipient without a living donor is not ‘entered’ or ‘accepted’ onto the DD waiting list until the day dialysis begins. It seems that different waiting list ‘rules’ operate in the US. So, why do we do it ‘our way’ in Australia?

Well, here, it is thought that all patients (on the deceased donor list) should be treated equally and have fair and equal access to the allocation of a ‘precious resource’ … DD grafts.

If patients are able to be entered onto the DD graft waiting list as CKD4 or CKD5 develop but end stage renal failure has not yet supervened - and may not for an unguessable time to come, then one would then have to ask the question … at what point during the ‘progress’ of CKD can a patient entered? Should it be at a pre-dialysis eGFR of 10? … or of 12? … or of 15? … or of 18? … or of 20? … all the way back up the CKD chain … and where does that chain end (or start)?

And, although in ‘progressive’ CKD the eGFR does (obviously) tend to slowly fall, a falling eGFR does also tend go up and down, often for a variety of reasons - some clear, others unclear - and the inexorable fall is rarely linear and absolute (18, 17, 16, 15, 14, 13 etc) but variable and changeable. So, a patients eGFR may be at 16 this month, but 18 a further 3 months later, then 15 or even 14, but then later back to 17 or 18 … and then it may hold at 17-18 for a year or more before showing signs of declining again. This is the way of eGFRs. Further, an eGFR is not always a reliable guide such as the European Renal Best Practice guidelines now insist (after the release of the Australian IDEAL trial data in the NEJM last year) that no decision to initiate dialysis (or, for that matter, any RRT) based on an eGFR but that other factors be in-built into the decision tree.

We believe here that a ‘level playing field’ is important for all patients and that the fairest, most level point to enter the allocation ladder for a DD graft is at the commencement of dialysis.

You haven’t started dialysis yet – ergo: here, you would not even be on the allocation 'list’ yet … unless, of course you were lucky enough to have access to a ‘pre-emptive’ living donor.

Most services here would likely proceed from CKD5 to pre-emptive transplantation at eGFR >10 or at sustainably significant symptomatic CKD5. You can see, then, that it was with more than a little surprise that I read that you have already knocked back 3 x extended criteria grafts.

When answering questions for this site, I am always conscious of the fact that I am an Australian, working in Australia, and not of the US or in the US … and, as such, I may be unaware of treatment nuances or system differences that may make my answers less applicable than they should be. But, apart from the obvious differences that I have learned from your question regarding the ‘rules’ that surrounding entry onto the transplant list (here, you would simply not qualify for an offer of a DD kidney (EC or ‘standard’), pre-dialysis and with a stable eGFR of 16), I think the rest of what I say might fairly represent the views on both sides of the Pacific.

As for extended criteria (EC) grafts … why, at 54 and being otherwise well, would you pre-empt for an EC graft? Why would you want to accept (or even be on) an EC graft list?

At 54, I’d want a really good kidney! … not an EC kidney … a kidney which may be ‘old’, or have ‘imported’ arterial or other disease, or which may come from a diabetic donor or a donor (potentially) damaged by other co-morbidities of prolonged warm (or cold) ischaemia times.

In my view – and, remember, it is only my view – I think it might be better to spend a bit of time on dialysis while awaiting a ‘yummy’ kidney rather than making a desperate lunge for an extended criteria kidney – just to avoid dialysis – and end up accepting a kidney with a likely limited function-span and an ‘at best’ poor eGFR. That, to me, makes no sense. Better to undergo planned, prepared, and good dialysis then have a real shot at a good quality graft with (anticipated) long-term function.

I know which I’d go for!

I am left wondering why would you even question that the initiation of dialysis is ‘dangerous’. It’s not, at least in my view it’s not.

Good, planned, optimum dialysis – wherever and however it is delivered – that stablises the biochemical state and which gains ‘control’ of what is, during the final stages of CKD5, a potentially out-of-control biochemical and volume state, would seem a better choice in my view than the acceptance of a parlous or doubtful kidney - one which by EC definition is already prone to delayed graft function, poor early performance and/or the need for post-transplant dialysis support … just for the sake of avoiding ‘the dangers’ of electively starting dialysis … whatever those perceived ‘dangers’ might be.

You pose the question … “how ‘dangerous’ (really is) the actual beginning of dialysis? I have read that the first year on dialysis is the most difficult and the one that poses the most risks, and I am wondering if I should try to avoid it at all costs if given the opportunity."

I am beginning to wonder if you could possibly be reading too much and getting confused by it all … and believe me, there is a lot to confuse out there! Hopefully, I am not adding to it in this explanation. But … I really don’t believe initiating dialysis is dangerous. Sure … no-one would choose dialysis. No-one wants dialysis. But to consider the start of dialysis dangerous? … no, I, for one, wouldn’t.

True, glitches can (and do) occur – but, if appropriate pre-dialysis preparations are made … and at your current eGFR of 16 and assuming your choice is HD (I believe that’s right), you should well and truly have your AVF in by now. That assumed, then dialysis transition at age 54 with no other major co-morbid issues should be simple and uncomplicated.

It is true that the first year can be the most difficult – but this applies to those where major co-existing co-morbidites complicate the dialysis start. This applies to people with nasty ischaemic heart disease, to (some of) the elderly, to the poorly prepared, to the late-presenters, to those without appropriate pre-formed vascular access … these are the issues that make starting dialysis difficult.

You, on the other hand, are prepared.

You have had lots of information - more, I suspect than almost all others - and maybe so much that it is beginning to confuse.

You should have had your access fashioned by now: at least, if you were here in Australia, you would have had it in and ready – especially on the assumption (your lead-in description) that you were not expecting a pre-emptive living donor kidney and thus were committed to the DD list.

So, no! … initiating dialysis is not, in my view, dangerous at all.

While it is always true that problems can occur, in young patients (you), without co-morbidites (you), and with a good preparation (I hope, you, too) … it should be a smooth, problem-free, uncomplicated transition … not a dangerous one to fear or avoid with a less than ideal kidney!

MooseMom … you surprised me with that one … whatever gave you that idea?

I can’t speak to Australia’s rules guiding transplantation. All I can say that upon either starting dialysis or upon falling below an egfr of 20, you can begin the process of getting on the list here in the US. You do not have to wait until you are actually on dialysis to be waitlisted. Why that is the case here, I do not know, but I am not sure I would label it as unfair in some way or making the field “un-level”. Perhaps one can argue that if a patient is already on good, optimal dialysis, s/he might in fact be in less need of a transplant than someone who is struggling with an egfr of 12. I really couldn’t say.

I don’t know why 20 is the magic number. Some people progress swiftly to ESRD and are on dialysis before they finish their pre-tx testing and are placed on the list. Others, like me, progress more slowly. Even my own neph guessed wrong about the rate of my decline. But 20 is the number, and as I don’t make the rules, I can’t explain them.

I only turned down one ECD kidney; actually, it was beyond ECD…it was “high risk” because the donor had been living with his HIV positive girlfriend. He had been tested regularly, and when he passed away, he had been awaiting test results but died before the results came in. So, the tx center could not guarantee the HIV status of this donor, so I declined… The other ECD kidneys I did NOT pass on; in the end, they were offered to other patients. I had been fourth in line for one and second in line for the other.

I have spoken to too many people who have had enormous difficulties initiating dialysis not to come away with the idea that it is fraught with risk. Trying to establish dry weight, trying to establish this level or that level, trying to find someone who won’t infiltrate you, trying to learn how to stick yourself, trying to avoid clinic-borne infection, trying to transition from a normal life to one stuck on a machine, trying to remain properly nourished, trying to sort out a new medication protocol, etc. I would be curious to know if there are that many renal patients out there who would truly wish to begin dialysis if they were able to be transplanted pre-emptively. My own nephrologist advised me that a pre-emptive transplant is the best treatment for CKD4/5, so there must be some reason why pre-emptive cadaveric transplants are available here in the US. I’m surprised that knowing American dialysis as you do, you express surprise at me! LOL!

I cannot imagine that starting dialysis even in the best of circumstances would EVER be seen as “smooth, problem-free and uncomplicated”!

And, how do you define “a bit of time”? I don’t know if I want to spend a “bit of time” on dialysis as here where I live, the average waiting time is now 4-6 years. I’ve lived with this damned disease for 20 years now. If I go on dialysis, it means that I can’t travel to London for any length of time to see my autistic son because I just can’t afford to pay for dialysis out of pocket and my insurance won’t pay for dialysis outside of the US. So no, 4-6 years is NOT “a bit of time” in my personal dictionary!

I supposed I’m skeptical of getting “good, planned, optimal dialysis” in this country, at least not at first. I don’t know how long it will take me to get fully up and running with NHHD, if it is even offered to me. I don’t want to have to jam great big needles into my arm every day if I don’t have to. And I am not sure why I should not be offered what my doctor feels is the best treatment for me just because I do not have a living donor. That’s not my fault. You make me feel like I am unworthy because I am “not sick enough” or that there must be something wrong with me because I do not have a living donor.

Anyway, thank you so much for your thoughts. I appreciate an “outside opinion” and thank you as always for your time! Have a great day!

Dear MooseMom

I did not mean to convey - nor do I think I did - any sense that you were ‘unworthy’ or that there ‘must be something wrong with you’ because you don’t have a living donor. The systems vary, place to place, country to country, and I tried to make it clear that I was talking from outside the US, from a different system - and one which I do feel glad I work within - as I believe that while it, as all systems do, has its faults, it is an equitable system.

I referred early in my post to the understandable fears and anxieties associated with initiating dialysis - and these are neither minor, nor anything other than wholly natural. Perhaps it is the semantics here that it the problem. You used the word ‘dangerous’ - and I took this word at its face value … perhaps that was my error. I do not consider danger as a significant part of most dialysis starts … but then I am part of the initiating team and not one of the initiatees. Fear, yes … and understandable. Anxiety … absolutely. But danger? I really don’t see danger as a major hurdle for most. The things you listed as hurdles of the transition to dialysis are, in my interpretation, things to fear: … and it our role to allay those fears as best we can … or things to create anxiety and nervousness: and we must defuse that anxiety where we can. But, dialysis started in a timely and planned and educated fashion in a young and otherwise well patient should not carry danger … certainly not significant danger … and only a small element of risk. And, regarding risk … there is risk in all we do - be it driving to work or crossing a street: it is how we manage risk to minimise harm that matters.

Again perhaps the problem is our differing interpretations of the semantics of the words fear, anxiety, danger and risk. I am sorry if I seem to have angered you greatly by my response: that was not my intention.

I suppose the initiation of dialysis isn’t “dangerous” if all goes well and your medical team is competent and has your best interests as their guide. But if things don’t go well and your clinic is more interested in the money you bring into their practice than in proper anemia management or in the plethora of other issues that affect someone with no renal function, then “dangerous” may be the more appropriate word. I don’t know what kind of care I will get at my clinic because I haven’t undergone dialysis there yet. We all fear the unknown, especially if we already have a pretty good idea of what the unknown can do to us. Perhaps I will just have to rely on faith to get me through it as I am not comfortable relying on clinic staff. I guess that is my own failing. I have never been to any doctor that has really worked to defuse my anxiety and fear. “You’re going to eventually end up on dialysis” doesn’t defuse my fear.

Perhaps it won’t be as awful as I am anticipating. Maybe for me, starting dialysis will be vastly anti-climatic and uneventful. I’ll let you know!

I asked for your thoughts and you gave them, and I appreciate it. I don’t ever expect people to tell me only what I want to hear, and if I am upset by any answers I get to any queries I have posed, then that’s my problem. I do not hold others responsible for my feelings. So apologies are certainly not necessary.