Dialysis and the rest of your life

Properly dealt with, dialysis is an important part of life for us BigDers, but it only amounts to about 20 hours per week; the rest is ours to eat, sleep and be merry (if the dialysis is doing its job).

For example, despite various expectations along the way I turn 60 next week.  It is a bit of a shock.  When I was young, 60 meant you had at least one leg in the grave, not to mention being creaky and gradually consumed by your body and ear hair.  I can tell you now, as usual, that youthful perspective lacks perspective (speaking from my perspective).  To me, 60 seems quite young (in my head I am a mature 35-year-old).  Though some parts do creak, especially going down stairs, and I am prone to unconscious grunts when I exert myself (I am working on grunting silently).

I have had kidney problems since I was 20, though apart from a progressively more stringent diet, it didn’t become a big part of my life until dialysis, when I was 43.  I had joined the navy at 15 and had a great time until an accident at sea damaged my left kidney.  It was then I found out I was born without a spare, and that the damage was a problem.  Then, to my shock and regret I was discharged from the navy, and I realised that I had to fend for myself rather than simply taking my bed, food and future for granted.  I felt quite lost.

But I am sure you have heard of the Good Luck, Bad Luck, Who Knows? story.  As a result, my illness I met Julie and a two years later we married.  After a few fun jobs like bricklayer’s assistant, barman, auto engine repair assistant, oven builder on an assembly line and panel operator in a radio station, our first son arrived. I had to get serious, so I started using my navy electronics training and wrote technical manuals for a defence company.

A few years and two more children later I started my own process consulting and technical publications company.  That was 26 years ago, and it is still alive.  It has been a good business:  it kept me off the streets and paid the bills and some days it was quite diverting.  My partner joined in 2000 and we made a good team.

However a couple of years ago we decided to wind it down, to work through our existing contracts but to not renew them.  We have both decided to move on to other things.  The business should be closed completely by Christmas.  I shall miss it like an old, sometimes very trying friend.

But I have a new friend.  At about the same time we decided to start a family business, called Smooth Hospital Move, to help hospitals transition to new premises (Julie’s background is in moving large hospitals, and I manage the business).  It is going nicely, we work well together.  I really enjoy having a family business.  It is a good, human size, without the pressure of meeting a big payroll and keeping the bank happy.

Julie also suggested that I start working from home, to minimise travel and to start enjoying our grandchildren a little more.  It took me a while to come to terms with this, not being a paid up member of the business suit class.  But I save at least an hour a day, not to mention the hassle of traffic.  I still travel to dialysis, but that’s all.  Now after breakfast, I just walk into my home office and I’m at work!

I also have a little more time to write this blog, and enjoy the contact with others in the same boat, read your BigD war stories and generally feel part of our accidental community.

So now and then we all need a reminder: BigD is important, not just because it keeps us alive, but because it gives us the rest of our lives.  And that’s a Big Deal.

3 thoughts on “Dialysis and the rest of your life

  1. Well, if you are working from home, do as I do, I have a NxStage machine in my office and I dialyse while I work – 2 birds with one stone, so to speak. So the 24 hours a week I dlalyse is also working time, so nothing lost! I understand the NxStage is now available in Australia, so maybe another chapter beckons? Good luck!

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    • Thanks Steve, that sounds interesting. I will do some homework on NxStage, it could work for me too. I’ll let you know. Greg

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      • Hi Greg,
        The advantage of the NxStage is size, plumbing is easy, and you can take it in portable mode on holiday where all you need is a drain for plumbing e.g. a sink. The machine itself is the size of a multi function printer (but heavier!) and the dialysate is made up in batches in the PureFlow which the NxStage machine sits on. Dependent on prescription, you may get 2 or three dialysis sessions per dialysate batch. The machine is considerably simpler than most ‘conventional’ dialysis machines. I have been using mine now at home for over a year and been away on holiday with it twice. Previously I had a Gambro machine at home, and have used Braun, Fresenius etc. Check with your local unit if they have signed up to use this. If not, I can find out where it’s available. If, like over here in the UK, different areas have different attitudes to this machine, and some have resisted taking it, but the results are speaking for themselves so it’s gaining in popularity.
        Best, Steve.

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