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.
Comments:
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?