End-Stage Renal Disease

The Foundation for IgA Nephropathy

End-Stage Renal Disease

Some people with IgA Nephropathy will eventually need renal replacement therapy. Irregardless of what kidney disease got you there, at that point, you are considered to have what is called End-Stage Renal Disease (ESRD). This means that, while you still have some kidney function, it is not enough to keep you healthy nor ultimately, to keep you alive. Kidney disease patients are considered to have reached ESRD when they are approaching 10% kidney function, as measured by glomerular filtration rate (GFR). When you have ESRD, you need renal replacement therapy. Renal replacement therapy can take a number of different forms.

Renal Replacement Therapies

Kidney transplant

Live donor transplant (related or unrelated)

Deceased donor transplant (also called cadaver kidney transplant)

Dialysis

Hemodialysis

Home hemodialysis

Conventional hemodialysis (approx. 4 hours, 3 times per week)

Short daily hemodialysis (approx. 2 hours, 6 days per week, usually same number of total weekly hours as in-centre conventional)

Nocturnal hemodialysis

Daily nocturnal hemodialysis (6-9 hours, minimum 4 nights, 5-6 nights preferred) (also called quotidian nocturnal hemodialysis)

Intermittent nocturnal hemodialysis (3 nights per week, 8-9 hours)

In-center hemodialysis

Conventional hemodialysis (approx. 4 hours, 3 times per week)

Short daily hemodialysis (rare, but sometimes available on self-care basis)

Nocturnal hemodialysis (rare, same as at home nocturnal, but generally 3 nights per week in-centre)

Peritoneal dialysis

Continuous ambulatory peritoneal dialysis (CAPD)

Continuous cycling peritoneal dialysis (CCPD)

Will I be able to continue working?

This is a frequent but difficult question to answer. There are some who can, and some who can't. There are some who can for a while, but eventually have to stop... and there is a small minority who are able to continue working almost indefinitely until some day when they just aren't healthy enough on a daily basis. It depends on the type of work and how flexible the employer can be, plus it's a fact that some people can handle dialysis better than others. In addition, there are other factors involved. For example, hemodialysis in particular has what are called "unphysiological effects" that are difficult to define. However, these effects might affect some people more than they affect others, and consequently, this could have an impact on how the patient feels immediately after dialysis and until the next treatment.

One problem with some websites which discuss this topic is that they try to be very encouraging and optimistic, perhaps more encouraging than the reality of the situation for most people. So, if you aren't able to work, don't despair about somehow being inadequate. It's not you, it's the dialysis and it's the kidney failure. Remember, dialysis really only keeps you in the vicinity of 10-15% kidney function, and that's only the part of kidney function that dialysis can do. It's doesn't take into account all the other things that our kidneys do for us.

You are more likely to be able to continue working if you go on peritoneal dialysis. Hemodialysis takes more out of you, plus the schedule is inflexible (except if doing hemodialysis at home)... so it can be harder to continue working. However, when it comes to dialysis, there are simply no guarantees. For one thing, peritoneal dialysis, while great when it works well, simply does not work for everybody. You simply cannot say, well, I'm choosing peritoneal dialysis, so, no problem, I'll be able to work. It just might not work out that way - and that happens more frequently than you might think just from reading websites about it.

Whatever method of dialysis you choose, the course of long-term dialysis is frequently marked with variations in health status which makes full-time employment unrealistic for many patients. You should at the very least plan on some disability time for the first few weeks or months, until you see how you feel, or else you might be risking a period without income if things turn out to be more difficult than anticipated. You will also need a few weeks for training if you choose peritoneal dialysis. There's no training needed for regular, in-centre hemodialysis, but, those first few weeks can be difficult for some.

Basically, it's a situation where you could work on some days (the days when you don't feel like you've just been run over by a steamroller), and you couldn't on others. This can make keeping a regular schedule for anything a little unpredictable. Just hemodialysis itself is like a regular part-time job (easily 15 hours a week). Peritoneal dialysis (PD) allows you more flexibility, but many of the PD patients we know who work seem to also spend significant amounts of time on disability. So, whatever you do, if you are fortunate enough to already have disability insurance, hang on to it, or else you might end up having to depend on social security of some kind. As stated before, it depends. Some more recent studies seem to agree with the idea that regular full-time work simply is not possible for most dialysis patients.

Bottom line? Don't put all your eggs in one basket. Expect and hope to be able to continue working normally if that's what you want, but also have a backup plan to ensure you have sufficient income to live, in case you can't work.

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