Q: Dear Dr O’Donoghue, I would like to ask what you think about Nocturnal Dialysis and how it could be offered more freely to those patients already on Home Haemodialysis (HHD)? I understand there are tremendous benefits to be had from long, slow dialysis overnight which is gentler on the heart and clears more toxins from the body, enabling some patients to come off various medications, resulting in a much better quality of life. It would be interesting to know what machines are used for this type of dialysis, and how the costs stack up against the usual type of HHD, so that I, and other patients in my situation, can discuss this more fully and knowledgeably with our consultant. Marion Higgins, HHD patient.
A:“Dialysing 6 nights a week for 8 hours each time has made an amazing difference to my health. The toxins in my blood are really low, I’m taking no medication, my blood pressure is normal and my haemoglobin levels have stabilised without injections.” This quote is from Patrick Pearson-Miles who manages his haemodialysis at home with the support of the Guys & St Thomas’ Hospital Team. Patrick’s elegant words convey the impact that nocturnal dialysis can have, in suitable individuals, much more powerfully than I could do. At a push I could explain the physics of why frequent, that is more than 5 times per week, sometimes called daily or quotidian (Latin for daily) dialysis, even for short periods of time – such as 2 hours per session – is more efficient at removing some waste products than conventional 3 times a week haemodialysis. Other impurities and toxins such as phosphate respond better to longer – overnight, called nocturnal dialysis. Frequent, long dialysis combines the best of both approaches but what you probably want to know is how that can affect the experience of being on dialysis. So, over to Patrick again “I’ve eaten mushrooms have had home-made banana milk-shakes and even celebrated with my first pint in 12 years, all of which would have been unthinkable under the old system”. Nocturnal home haemodialysis therapy has been around since the 1960s when it used to be the usual way of delivering long, slow dialysis. In the 1960s and 1970s many patients dialysed overnight three nights per week. They felt well. Survival rates in Tassan, France which has reported most extensively on this model of dialysis, were among the best in the world. Although home and night time dialysis have declined since 1980, due to the growth of hospital and satellite based dialysis, there has been a renewed interest in the therapy in recent times as frequent nocturnal haemodialysis has a substantial impact on survival and quality of life in patients on dialysis.The therapy can be performed safely at home at night allowing long hours and/or frequent dialysis. The dialysis itself is performed with essentially the same equipment as other home haemodialysis patients use.
The main differences from standard haemodialysis are in the lines used, which have to be longer than normal lines to allow for movement whilst asleep and more secure attachment of the lines with a blood leakage alarm as a safety feature. Typically it is performed with slower blood and dialysis flow rates, which provide clearances far in excess of any other dialysis modality. Most patients choose to dialyse for as long as they sleep at night. The dialysis schedule can be tailored to an individual’s need taking into consideration diet, sleep patterns and biochemistry. The longer hours provide excellent biochemical control, including phosphate and blood pressure. People can stay on a more liberal diet and fluid intake, and usually do not require phosphate binders or blood pressure medications. Some patients may even drop their phosphate levels too low requiring additional phosphate supplementation in the dialysis fluid, although this can also be managed by increased phosphate intake in the diet.
Now, not everyone is suitable for home haemodialysis, but if you are you are entitled to receive dialysis customised around your individual needs. The National Service Framework for Renal Services guarantees that ‘renal services are to ensure the delivery of high quality clinically appropriate forms of dialysis which are designed around individual needs and preferences and are available to patients of all ages throughout their lives’ (standard 4) and goes on to state that ‘all dialysis methods should be available interchangeably for patients including home haemodialysis’.
If you are reading this and thinking that home dialysis or nocturnal haemodialysis is something you might want to consider (and why not?), I would recommend Googling nocturnal haemodialysis and looking at http://www.nocturnaldialysis.org/ and looking at the " am I suited to nocturnal haemodialysis?" section. It is well written and identifies 4 key factors to determineyour suitability for nocturnal home haemodialysis:
you must want to take control of your care
you must be physically capable of self care
you must be mentally able to learn to run your own machine
you must be emotionally stable and able to make decision.
People who take an interest in and control of their care get much better outcomes than those who don’t. The subjective experience of living on dialysis is not only much better for people on daily dialysis but the outcomes are also much better – survival is longer and hospitalisation is less. In many studies, the cost of daily dialysis when hospitalisation and drug costs are counted is reported to be lower than conventional haemodialysis. There are some practical issues related to increased use of heparin and larger bicarbonate bags and it is important to get these right to avoid triggering alarms and disrupting sleep. A noisy reverse osmosis unit can be a potential barrier but can be overcome by choice of reverse osmosis system and its location. Dialysis away from home may have to be a conventional treatment as not many holiday units will provide such long hours of dialysis. Most patients tend to cope well on shorter hours for a brief period without significant problems.
In recognition that home haemodialysis is often but not always prescribed as a 5 or greater times per week therapy, I have recently recommended to the NHS financial teams that this should be reflected in the average costs. Water and electricity costs are reimbursed by the renal unit as appropriate for the length of the treatment pro rata. There are no additional significant setup or maintenance costs for performing the home dialysistreatment at night but the renal unit will have to provide a helpline and out of hours technical support in the event of any problems.
Nocturnal haemodialysis can have a great impact on independence & quality of life with superior outcomes and should be encouraged in all patients on home dialysis. If you wish to consider this therapy as an option, discuss it with your dialysis nurse and seek advice from your own consultant. You could also talk to several other patients or experts in the UK who are currently practise nocturnal haemodialysis either through the Kidney PatientAssociation or by directly contacting myself so I can put you in contact with such teams and patients. Finally, let me leave the last word to Patrick: “the biggest plus is I now have 7 free days. Before, four days a week involved dialysis, which really affected my life and ability to work”.