Healthy on Dialysis for 32 Years (and more to come!)

Kevin Collins emailed me the other day, to follow up on my post about the Nocturnal Dialysis service being offered by the Diaverum Dialysis Unit at North Melbourne.  In it I said that nocturnal dialysis started in Australia in Geelong in the late ‘90s.  But no! There was much work done and quite a story before that.  A story that is well worth sharing.

Kevin is a very interesting guy.  He was born in 1963 with Alport Syndrome, a genetic disorder which results in end-stage kidney disease and hearing and vision difficulties.  His kidneys started failing when he was 3.5 years old, but with no dialysis available at that time, he struggled on with reducing kidney function until finally at 16 he began peritoneal dialysis with the Royal Children’s Hospital.  Within a year he moved to haemodialysis.

Over the following 15 years, Kevin had three transplants: the first, in November 1980 lasted a month; the second, in November 1981 lasted a year; the third, in May 1995 lasted a few weeks.

At 26, in September 1989 he decided to switch from satellite unit to home dialysis.  Doctors were hesitant at first since he was living by himself.  So, following some home HD training, he dialysed himself in a safe environment, first in-centre, then at a satellite unit, until he demonstrated that he was safe dialysing alone.  His own main worry was that he would find it difficult to establish a reliable needling routine alone, but he fretted about it unnecessarily: it quickly became just another element in the process.  His fistula is in very good shape, having never had a problem with it – after 32 years and more than 12,500 punctures.  He uses the ladder technique (not buttonholing).

In the early 1990s, kidney specialists at the Royal Melbourne Hospital read about Dr Udall’s success with nocturnal dialysis in the Canadian Medical Association Journal:

Nocturnal Hemodialysis: Dialysis for the New Millennium

This technology offers unparalleled quality of dialysis:

  1. Urea clearance can be as good as it is with normal kidneys, compared with 15-20% clearance with conventional hemodialysis.
  2. Phosphate binders are not required because the procedure provides good phosphate removal
  3. Patients become anabolic, hemodynamic stability is ideal for compromised patients
  4. Blood pressure control is excellent
  5. Erythropoietin requirements are reduced 
  6. Most patients no longer require antihypertensive medications
  7. Nocturnal hemodialysis has been found to improve the quality of sleep and daytime cognitive functioning
  8. On quality-of-life questionnaires, patients have reported significant improvement in most areas
  9. Patients have noted increased energy levels, better appetites and improved skin colour and condition
  10. Diet is not restricted, and most patients are able to return to work.

Nocturnal hemodialysis was conceived by the late Dr. Robert Uldall.  The first patient was trained to use the nocturnal hemodialysis system in April 1994 at the Wellesley Hospital in Toronto, Ontario Canada [CMAJ November 2, 1999 vol. 161 no. 9].  (Take a bow, Canada!)

They decided to try to reproduce the results in Melbourne.  However, one obstacle was the complexity of the dialysis machine: only 20% of the dialysis patients had the abilities required to be trained in its proper use.

Enter Kevin Collins.  Already dialysing at home alone and well known at the Royal Melbourne, Kevin was an ideal first candidate for nocturnal dialysis at home.  As Kevin says, “It was not an approved therapy at the time, but one that in theory was too good not to try.”  His only request: to replace his Cobe Centry System 3 machine with a modern one that had alarms that could wake him up when needed!

As before, he started with a single trial run in The Royal Melbourne Hospital setting to iron out any wrinkles, then once the technique was proven, moved home again.  Obviously, the trial was a success and pretty well all of the benefits promised actually happened.  He has been dialysing nocturnally ever since (currently 14 years).  And he has learned quite a bit:

  • He dialysed six nights a week for the first year but found he could reduce this to 5 nights a week with no ill effects
  • He only sleeps lightly – he compares it to how a mother sleeps with a newborn baby – dozing on the edge of wakefulness.  Consequently, he has never rolled on to his needles or bumped them.  He believes his subconscious takes care of all that.
  • Initially, he found it difficult to get into the habit of sleeping on dialysis and took quite a while to settle
  • There should be no distractions (like TV) or stimuli (like exciting books)
  • He does not fall into a deep sleep and he doesn’t dream.

“There are major benefits to longer dialysis through nocturnal, even doing it on alternative nights but the significant benefits are achieved with consecutive nights.  However, there is a trade-off.

Before diving in at the deep end talk it through with your partner.  I was married for about seven years and it was Nocturnal Dialysis that affected that relationship within 18 months of starting.  Because of the frequency I was doing it, the dynamic of always sleeping together was changed and it gnawed away at our intimacy. We were sexual beings both in our thirty’s, it fell away pretty quickly.

The reason for trying nocturnal was one of necessity; I was on dialysis for the long term with no real prospect of a successful transplant on the radar.  I was always looking for ways to cheat the long term diminishing returns of dialysis.  If l was to continue the boom & bust cycle of traditional thrice weekly dialysis my physical quality of life was imperilled.  There is a relentless inflammatory effect on the body with dialysis and with a lot of dialysis years ahead that was the choice I made.

For most of the 24 years of doing dialysis at home, I’ve lived alone.

I have no diet restrictions, not even on the non-dialysis days, although I watch fluid intake on those 2 days only.  Bloods are all normal, no pills, except EPO.

Apart from working full-time l also do weights four or five days a week at a gym and have done for over 20 years.  Conventional dialysis wouldn’t have allowed me to still be doing this after so many years, l can assure you!

There are few other chronic conditions that run 24/7 for the rest of your life.  You have to own your dialysis.  You must know enough to make your own decisions based on evidence and knowledge (a message he promotes through his involvement in Pre-Dialysis Education).

Fundamentally, the choice you make about dialysis and how you go about it will ultimately allow you to retain as much of your pre-dialysis lifestyle as possible.  And that is the key to enjoying life on dialysis because it isn’t going away in a hurry.”

Kevin is a treasure trove of knowledge and experience on nocturnal dialysis and dialysis generally.  He would be happy to respond to queries and comments.  He is a great resource so please feel free to use him!

2 thoughts on “Healthy on Dialysis for 32 Years (and more to come!)

  1. Thanks for this, Greg!! We are trying to get Nocturnal Dialysis, and this is a great starting place for a discussion with the doc. It couldn’t be timlier… our appointment is this Monday!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s