Dialysis: what to expect

I often get asked for advice from people who are about to start the BigD.  I mostly say that dialysis is no big deal.  It’s a very effective treatment that involves a change in lifestyle.  But saying this is not really enough, mainly because most people have their own expectations about dialysis that are often related to how quickly their kidneys failed.  So I thought it may be useful to look at some of those expectations and see how they hold up.

For some, the need for dialysis comes as no surprise; their kidney have been slowly failing and their doctor has prepared them for months or even years.  As a result, these people often develop a real dread of dialysis.  For those whose kidney failure is quick and unexpected, the shock of needing dialysis on top of the trauma of kidney failure does not come with anything like the same anxieties.

Friends and family don’t usually know much about dialysis, except that it’s a bummer, involving needles, machines and lots of time out of your life.  All of these things are true; I don’t know many people who would dialyse if they didn’t have to.  But it’s also true that dialysis gives you the rest of your life back, to live the way you want to.

Kidney failure is the real bummer.

If they fail fast and unexpectedly, you’ll switch from a healthy individual to a very sick, weak, grey, panting, aching, puffy and dopey one within a few days.  Forget walking down to the shops, visiting friends or having a nice drink after work – forget work too.  The contrast from healthy to unhealthy is so stark, that in a very short time most people welcome dialysis.   And they are pretty happy with the result.  After a week or so those lousy symptoms and feelings go away and their old life though modified, seems possible again.  (Don’t get me wrong, I’m not saying there is no resentment, anger and sometimes despair, I’m saying that people in this position are usually more open to dialysis.)

It can be more difficult for people with long-term kidney disease (like me).  I had a dramatic loss of function to one kidney in 1972, and at that stage found out the other kidney was not working.  Luckily the failed kidney was repaired and the remaining function was enough to get me by for the short to medium term.  But in the early 1990s I became increasingly unwell, and my doctor began preparing me mentally and physically for the BigD.  Physically, this was a good move.  My fistula was in place and a good size when I started dialysis in 1995.  Mentally, not so good:  I began to think of dialysis as a big black BAD.  It was a dark zone which represented failure, loss of freedom, maybe pain and general misery.  To me, the dread of starting dialysis was worse than the kidney failure.

So, of course, I held off for as long as I could (much longer than I should have) and so was quite sick when I started.  And I was sure that it would be a terrible experience.  The needles were a shock, but there was local anaesthetic, so not much pain. The rest of it, being uncertain about what to do and what would be done to me, sitting quietly for four hours, turned out to be not that bad: a cup of tea, TV, a small snack, several blood pressure measurements and even a chat with others and the run was over.  The needles came out, dressings on and I went home.

After a week or so I started to feel pretty well, so I became ambivalent: I liked what dialysis did for me but I hated going there and losing all that time.   That feeling didn’t go away for years (I’m a slow learner).  But eventually, it became clear: my BigD time is an investment in the quality of the rest of my day, my week, and my life.

There are few uncertainties now.  I put in my own needles, painless using the buttonhole technique; I have things to do during each run and the time goes pretty quick.  Dialysing five times per week means I can eat what I like (mostly) and I’m in good health, so I live an active life between runs.

So, what should you expect from dialysis?  You should expect a few seconds of needles that become less and less worrisome over time.  You should expect to invest around 15 hours of your time per week, so start thinking of things to do while you are there.  But mostly, you should expect to feel pretty well within a week or so of your first run.  It’s not something to dread; it’s not easy at first, but it gets easier to handle as time goes on, and it gives much more than it takes.