My Journey to Nocturnal Dialysis

by Marion Higgins

Personal Background

I have been on dialysis now for nine and a half years. Initially I was on four times-daily Peritoneal Dialysis then Assisted Peritoneal Dialysis (APD). Sadly after about 9 months I started to experience problems and was advised to go onto Haemodialysis (HD). I resisted for as long as I could – I did not want to go to hospital for treatment or have a fistula made! Talk about being unenlightened.

Eventually my health grew worse and in the end I had no alternative. HD it was! This meant travelling 40 miles to Oxford to receive my treatment until a slot could be found for me locally. I was able to return to work, but this meant the long drive to and from Oxford, sometimes not arriving home until 1am. Somehow we coped (I say we because all of this involved my husband without whose support I could not have carried on), and after 5 months a slot was found at our local unit in Northampton.

Home Haemodialysis

No one ever mentioned Home Haemodialysis to me, until one day I discovered what was happening in the ‘isolation’ room at the end of the ward. A patient was being trained on Home Haemodialysis! I had a long chat with Colin (the patient) and Carol his wife who told me all I needed to know. After discussing this with Jim, my husband, he said “What are we waiting for?” The rest, as they say is history and I have been dialysing at home now for five years.

The treatment suited me well and by dialysing from 6pm to 10pm before bedtime three nights each week, I had seven full days to do exactly as I wished. By this time I had taken early retirement from work so this was even better! So, all was well with the world.

That is until I went to some talks given by the Modernisation Initiative devised by Guys & St Thomas’ Hospital IN London. My world was about to change again, although I didn’t know it then. As I listened to Dr Cormac Brean speak of the efficacy of something called “nocturnal dialysis”, I couldn’t believe what I was hearing. The treatment involved a long, slow dialysis which takes place overnight whilst the patient is sleeping. He demonstrated that the benefits are tremendous with much improved blood figures giving an overall feeling of well being. The thing that finally sold the concept to me was listening to the patient speak, Patrick Pearson-Miles. Patrick told us that he felt better than ever – no fluid or diet restriction; more energy and drive etc. I needed no further convincing and the next time I had an appointment with Dr Warren Pickering, my consultant I told him all I had learned.

Nocturnal Haemodialysis Training

Dr Pickering was extremely supportive and we carried on discussing the subject each time I had my “check-ups”. It was after Dr Pickering attended a conference himself where this topic was on the agenda that things really started to move. Together we visited Guy’s to see Dr Brean and nurse Colin Jamieson, who, together with Patrick-Pearson Miles and his wife, had been to Holland where this treatment had been going on for around three years.

After this visit Dr Pickering set the wheels in motion and on May 11th this year, Jim and I began our training at Finedon Ward, which is part of the brand new Kidney Centre in Northamptonshire. The first few sessions took part during the day, so that I was still having a drink and snack whilst on dialysis, but once we switched to overnight this stopped.

This treatment was as new to the nursing team there as it was to us. I have to say that the training was excellent and together we learned how to sort out the few teething problems. The whole nursing team at one time or another came along to have a look and ask questions. Their enthusiasm was fantastic and once they began to see my blood results everyone was over the moon!

The machine we use is a Fresenius 4008S, which has two pumps. We need two pumps because we only use a single needle, and I am practicing the ‘buttonhole’ technique in which you insert the needle into the same ‘hole’ each time. This then creates a channel rather like the one in your ear if you have pierced ears. We had to learn how to cover the needle and lines with a bandage to ensure they were firmly in place and could not be disturbed whilst sleeping. The other essential is the ‘red sense monitor’. This is a device which is attached over the needle and which bleeps if there is any blood leakage in that area. It is extremely sensitive to even the slightest speck of blood and we had to make a few minor adjustments to stop it from alarming every five minutes.

Blood Results

It is stated that nocturnal dialysis can be as beneficial as a transplant. As I dialysed really well previously I wasn’t expecting miracles. However, clearly they do happen! My urea and creatinine levels came right down at around 1.8 for urea and 180 for creatinine; although this does vary from day to day. The first blood test after going home scared the team as my potassium post dialysis was down at 2.5; I received phone calls urging me to eat bananas to raise my potassium levels. Phosphate levels are now low too at around O.74, although they have been as low as 0.30 and a high of 1.36!). We add 3 mls of Addiphos to the Dialysate solution to prevent too much phosphate from leaching from my blood.

For the first two weeks we took daily bloods and now that they have settled down we are taking bloods weekly.

A new feeling of well-being

I now dialyse six nights each week for 8 hours at a time. Nocturnal dialysis is much gentler on the heart and evidence shows that this slow process removes more toxins and more closely mimics the normal kidney function than shorter, faster bursts of dialysis. It also reduces blood pressure as well as the need for some medications.

I really cannot adequately describe my sense of well-being. Some nights I am a little restless but mostly I enjoy a good night’s sleep. The quality of sleep is much better than I had been experiencing on conventional HD and I really am less restless.

My appetite over the past few years has been appalling and what has been absolutely amazing in all of this is that on day 2 of the training I was asked to dispense with my phosphate binders (I was on 9 per day). This was then a trigger for my appetite to return with a vengeance and now I am eating really well and best of all am now scanning recipe books for tasty dishes. Jim is delighted with this as he has been the main cook of latter years! The first thing I tucked into after my first treatment was a pizza, which I enjoyed completely and without guilt! I have also reduced my intake of Alfacalcidol. I have been given some special vitamin tablets suitable for renal patients to take too.

I wake up each morning feeling ready to face the day. I can get straight up, and feel ready to go out immediately. Jim tells me that my sense of humour has returned and that I am less uptight. Clearly thrice weekly dialysis was beginning to take its toll on us both.

Since starting this treatment I have been to a three day conference in Estonia, which meant that I had two dialysis free nights. I have also attended a three day conference in Birmingham where I enjoyed another two dialysis free nights. The amazing thing is that whilst away I had the energy to carry on as if I had no kidney failure. Apart from the fact that these were both renal conferences I could almost forget that I was a renal patient... of course I was telling everyone who would listen how good Nocturnal Dialysis is!

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Page created: 14 July 2009

Last updated: 3 February 2010

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