This is a question which I have been dreading might be asked but suspected might crop up.
As you have said, it is a question (in fact it is life’s greatest question) quite impossible to answer for any individual person. In patients with renal failure, it is even more impossible to answer – particularly if all there is to go on is a sentence or two of an extremely long and complex past history which includes the least 12 years of CKD, unsuccessful transplantation, peritoneal dialysis (perhaps (?) complicated by adhesive disease following peritonitis) and then conventional and later nocturnal haemodialysis – a total dialysis history already extending over 11 years.
In addition, there are a number of ‘ co-morbidities’ that complicate the picture for you, as an individual, and which suggest that your more than a decade of renal replacement therapy has already worked some mischief … perhaps with cardiomyopathy (LVH), certainly with neuropathy and with the hint (bone pain) of progressive bone disease. There is the added issue of Hepatitis C positivity – the effects of which need specific information and understanding to interweave with your other co-morbidities.
None of us know the answer to the question ‘ how long have I got to live’ and, even if I knew a very detailed medical history of you – far more detail than that I have in front of me – this question is still unanswerable.
The easy way out for me is simply to type a platitude like ‘make the most of each day’ and leave it at that. But, as you have asked a very serious question, you deserve for me to try to do better for you than that.
You will understand that I can only spout statistics at you – and none of these address the ’individual you’. That said, there seems no doubt that longer and more frequent dialysis (haemodialysis) – as you are already undertaking – carries the best chance of longevity and good health. A ‘given’ is that I am presuming transplantation is either not available or remains pending, for whatever reason. In young people in particular, transplantation carries the best outcome. I doubt you could find anybody to challenge that statement. If you are on a transplant list or have an option of transplantation at some time in the future – assuming that your medical co-morbidities permit it – this remains, statistically, your best chance into the future. There have even been a few recent papers suggesting that nocturnal haemodialysis survivals approaches cadaveric transplantation survival rates although this data applies to patients who do not have a lead-in time of renal replacement exceeding a decade.
There is, however, certain data – derived from DOPPS II (the Dialysis Outcomes and Practice Profiles Study (I,II,III and IV) which has been ongoing in a large number of countries round the world for nearly a decade) – which shows that for any level of dialysis adequacy as expressed by Kt/V (yuk, longer dialysis time reduces dialysis mortality. I am not sure whether my attempt at including a PowerPoint slide at this point will work but, if it does come out, you will see that for any given level of adequacy, the relative risk of death diminishes as dialysis treatment time extends.
Damn … I see the slide didnt reproduce … sorry!
There are other data that clearly support longer and more frequent dialysis and lower mortality. It would take pages to detail them. However, this single graph (I hope it shows)paints the picture well.
You are already doing the best you can to extend both the length of your life and its quality. Long, slow, overnight dialysis (as you are doing) – at least in my own view – offers you this.
But, you already have heart, nerve and bone troubles. The seeds for much of this would have developed during the time of your initial failing kidneys (CKD), your failed transplant and presumably the efforts at greater immunosuppression to prevent its loss (if it rejected) and then, 11 years of various dialysis – peritoneal and then conventional haemodialysis – before coming to nocturnal haemodialysis. This damage cannot be undone – simply, its effects can be minimised as best as possible by optimising your dialysis, as you have already done.
Dialysis survival rates are even difficult to predict within countries, let alone from country to country. United States annual dialysis mortality has long ranged between 20 and 25 deaths / 100 patient years (depending upon your year of dialysis – the chance of dying is greatest early) while Australian death rates have generally been around 14 deaths/100 patient years. This data is freely available through the USRDS and ANZ DATA reports.
Are these differences due to ‘better dialysis’ in Australia compared to the United States, or are they due to differences in patient selection or to a different disease and ethnic/demographic milieu (among other things)?
I honestly don’t know.
Arguments have long raged back and forth about such issues but it is not helpful to try and unpick them here and I won’t try! I simply observe the difference. More pertinent to you, I have no idea what survival expectation might be placed upon a dialysis patient in India. The difference between the United States and Australia suggests that there may be similar differences (also for mainly unexplained and/or inexplicable reasons) between India and, say, Australia or the United States.
Many younger patients, despite a similar history to yours of failed transplantation and various dialysis modalities, do very well for a very long time indeed – decades! We have a number of patients with very similar stories to yours who, for one reason or another have been dialysis dependent for most of their renal replacement time, who are well into their fourth decade of renal replacement and who are still doing very well, working, living, enjoying and showing all signs of doing so for a long time yet. Ok, these patients are a minority in the dialysis services round the world, but we all know them. Nancy (she gave a Webinar on this) is a case in point. All that says is that ‘good things’ are possible and do happen.
For you? … I cannot tell. I would, however, suggest you face your future 10 to 15 years (your quote, not mine) with optimism. We really are getting better at what we do. Outcomes really are improving. New equipment really is on its way – equipment which will simplify dialysis – particularly at home – and improve the quality of life for patients who can access home haemodialysis.
As for investment versus pension? … the global financial crisis of the last 18 months has shown us that it is impossible to predict what is the best financial plan for people who do not have kidney disease or dialysis dependence, let alone for someone in your position. Poll 10 financial advisers re which of those two choices to take and how best to pursue either option … and they will give you 10 different answers. These will be independent of any underlying medical problem that the questioner may have.
Kamal … I am sure I have not helped you one little bit by all of this. However, I can only advise any patient to
avail him or herself of the best possible dialysis he or she is capable of embracing
don’t take short cuts in technique
be very careful about asepsis
strive for the very best dialysis water quality possible
- look to whatever lifestyle and quality of life improvements might be possible.
For the rest, it is ‘trust to luck … and keep your fingers crossed’.