Dialysis Education

A USER-FRIENDLY GUIDE TO KIDNEY FAILURE AND ITS TREATMENT : A USER-FRIENDLY GUIDE TO KIDNEY FAILURE AND ITS TREATMENT Introduction for 3 monthly Patient Education Days Prof John Agar The Geelong Hospital Renal Unit

This talk : This talk What are ‘vital organs’ How the kidneys work and what they do What happens when the kidneys fail What can be done if they do Dialysis Transplantation (though mainly for another day) Dialysis choices … what’s best for you Though things can go well, sometimes they don’t How dialysis works … a football analogy but first …

The body inside ... : The body inside ... The human body is a complex machine It is made up of many parts Some parts are essential to life while other parts, though important, are not essential. We can live without eyes, ears, an appendix or a spleen … we can even live without arms or legs. But we cannot live without our ‘vital organs’

INTRODUCTION : INTRODUCTION

The vital organs : The vital organs The Brain - the “command centre” The Heart - the “pump” The Lungs - the “bellows” The Liver - the “manufacturing centre” The Kidneys - the “waste-disposal unit”

The kidneys are ‘vital’ to life : The kidneys are ‘vital’ to life The kidneys are a vital organ, essential to life Without kidneys, we cannot ordinarily survive Luckily, medical science has worked out some clever ways to replace the function of the kidneys if they fail

Slide7 : What follows will help you understand: what the kidneys do why they sometimes fail what happens when they do fail It will also show how we can help you with … Dialysis (artificial kidney treatment) and/or … Transplantation (a brand new kidney)

Imagine your body is like a factory : Imagine your body is like a factory The Factory A factory uses raw materials to make a product In the process, waste is created If not cleared away, waste will build up This upsets the smooth running of the factory The cleaners job is to remove this waste Without cleaners, the factory will stop working

Your body is just like that factory : Your body is just like that factory The Body It also takes in raw material … … … food It creates ‘a product’ … … … energy But it makes some chemical ‘wastes’ along the way Creatinine, urea, phosphate, potassium … and others These ‘wastes’ must be removed if the body is to run smoothly The main job of the kidneys is to remove this waste

Next …Imagine your body is like your house : Next … Imagine your body is like your house This is your home Each week, you collect three bins of rubbish Each week, the council truck comes to remove your rubbish Three men work on the truck

The ‘rubbish remover’ : The ‘rubbish remover’ This is the ‘rubbish truck’ Remember: three men work on the truck Each man can only carry away one bin at a time One man, one bin

Slide12 : One man hurts his back Only two men are left to carry the bins - but you put out three bins! Remember, one man can only carry one bin So, two bins are taken away … but one has to be left behind

Slide13 : In the first week, two of the three bins are taken … … but one is left behind The next week, you put out your usual three bins but you also put out the one left from the week before Four bins now wait ... but one man is still off sick! As only two bins can be taken by the two men, two bins are now left behind

Slide14 : As each week passes, more and more rubbish collects at your house Week by week, less is removed than is made The rubbish begins to smell … YUK! Your house soon becomes uncomfortable to live in

Slide15 : The same thing happens when the kidneys fail! Just like the rubbish builds up in your house when the rubbish truck ‘fails’ you Waste builds up in the body as more waste is made by the body than the failing kidneys can remove The body isn’t making any more waste … just … less is being removed

OK … what else do the kidneys do? : OK … what else do the kidneys do? As well as removing wastes, the kidneys do some other pretty nifty things too! They control the blood pressure They remove excess fluids and salts They make EPO (a hormone which signals the bone marrow to make red blood cells) They regulate calcium and vitamin D levels, thereby controlling the strength of bones

Can you ‘predict’ the symptoms …? : Can you ‘predict’ the symptoms …? Waste build up: Toxins in the bloodstream Poor BP control: High blood pressure Fluid retention: Swelling and breathlessness Anaemia: Tiredness and lack of ‘go’ Low calcium: Weak and aching bones High Phosphate: Skin irritation and itch Other problems: Cramp and bowel disturbances

What causes kidneys to fail? * : What causes kidneys to fail? * Nephritis - kidney inflammation (30%) Diabetes - now the biggest cause (33%) Atherosclerosis - narrowed arteries (12%) Reflux - urinary tract malformed (10%) Polycystic Kidneys - inherited ( 8%) Analgesics - excess painkiller use (< 5%) Plus lots of other, less common conditions * = Australian data (from ANZDATA)

Why don’t I feel very sick? : Why don’t I feel very sick? Almost all kidney disease is painless Kidney disease comes on very slowly. The body “adjusts” to feeling unwell, so … this slow change is not easily recognised The symptoms are tiredness, easy fatigue, sleepiness, loss of appetite, itch or night-time cramps. These symptoms are often shrugged off as … “I’m getting older” or “I’m slowing down” and are often ignored … by you and by your doctor

The solutions include:- : The solutions include:- Slowing down further kidney damage By treating the underlying disease By aggressively controlling high blood pressure Using drugs ending in ‘pril’ (ACEI) or ‘sartan’ (ARB) … these help lots in slowing the progression of kidney disease By controlling infection By controlling high cholesterol levels Making less waste Diet helps reduce the amount of waste the body makes Gentle protein restriction may help … though not too much! Removing the waste in other ways By artificial kidney treatment (dialysis) or by transplantation

What can be done to treat me? : What can be done to treat me? Many kidney diseases can be treated and stabilised (at least for a while) and can certainly be slowed down This is done by the control of: blood pressure, blood chemicals: potassium, calcium, phosphate sugar, salt and protein intake the treatment of infection the treatment of anaemia (with iron, folate & EPO) All of these will help and all are important …

But … if these things fail? : But … if these things fail? Despite all these things being done … and done well … kidney disease all too often slowly “progresses” Sadly, it often ends in ‘kidney failure’ But … even when the kidneys have failed, many treatment options still remain … These options centre around 2 treatments: Artificial kidney treatment (dialysis) Kidney transplantation

You’ve been told you have kidney failure ... What now? : You’ve been told you have kidney failure ... What now? First … all is not lost … so, try not to despair There is much work to be done Though the future can look scary, there is really lots of hope and promise There is a lot for you to learn There are many people who will help you and help you adjust to your chosen treatment

Learn, learn, and learn more : Learn, learn, and learn more Your greatest weapon against your disease is knowledge Learn all you can Take an interest Listen Ask

At the moment, you may feel ‘violated’ : At the moment, you may feel ‘violated’ Think how you’d feel if your house was robbed … A feeling of loss … of anger … of violation Even if the police returned most of your goods … even if your house was returned to reasonable shape … your sense of violation would persist … long afterwards

An illness has that same effect : An illness has that same effect Even if the doctors can treat you Even if your health is largely restored … as it is to a large extent by good dialysis You will still feel that sense of invasion That’s normal That’s human That’s OK … you are entitled to feel that way …

Slide27 : So … what can be done to help you?

The choices are:- : The choices are:- Dialysis the medical term for artificial kidney treatment Transplantation the receiving of the gift of another’s kidney

There are two main treatment options : There are two main treatment options Dialysis treatment and … there are two main choices in dialysis Haemodialysis (‘blood’ or ‘machine’ dialysis) Peritoneal Dialysis (‘ambulatory’ ‘tummy’ dialysis) Transplantation and … there are two main choices in transplantation Cadaveric (a deceased, unrelated donor) transplant Living donor transplant

Options in dialysis (1) : Options in dialysis (1) The essential and most important dialysis choice is Dialysis at home in your time by your schedule Dialysis at a centre in the centre’s time by the centre’s schedule

Which? : Which? No matter how you look at it Home gives the best outcomes Most particularly though … Survival at home is much better Freedom at home is much better

We believe … : We believe … Home is best if you can do it Home dialysis can be either by Peritoneal … which is always at home Haemodialysis … which can be home or centre And … if you CANT manage either at home There is always the fall-back of the centre

Options in dialysis (2) : Options in dialysis (2) Haemodialysis Home haemodialysis (day-time or while you sleep) Full or limited care (‘satellite’) haemodialysis Full-care (‘in-centre’) haemodialysis Peritoneal dialysis Continuous Ambulatory Peritoneal Dialysis Automated Peritoneal Dialysis using a cycler machine through the night

Again … What’s best? … HOME! : Again … What’s best? … HOME! Home, home and, then, home again Home-based dialysis gives greater flexibility Though not suitable for all, home dialysis produces the best outcomes Many people think they could not manage a dialysis machine at home … but it is easier to learn and safer to drive a dialysis machine than to drive a car …

Slide35 : A question for patients only now …

Slide36 : Patients only … Hands up who drives a car!

Driving a car needs … : Driving a car needs … Coordination Dexterity Vision Concept management Emergency decision-making Ability to interpret warning signs Self-preservation techniques and GUTS

Slide38 : Yet driving is second nature to us Driving a dialysis machine is safer easier quicker to learn and you wont hurt anyone else

Both HD and PD … : Both HD and PD … Both major forms of dialysis are home techniques Both can be done … either by day or at night, asleep Both are encouraged and supported here in Geelong HD may suit some … PD may suit others Talk to your doctor about this … if he/she hasn’t raised it already

Slide40 : Don’t dismiss home dialysis until you have discussed it with the staff and with your doctor. They will be able to advise you ‘yes’ or ‘no’. If you want to know more and if you have the internet visit our website http://www.nocturnaldialysis.org It is the most used NHHD site on Google

What about transplantation?Though this session focuses on dialysis for younger patients, transplantation is bestAsk your doctor if you might be a transplant candidate … though sadly, many are notWe run separate transplant education sessions … but, briefly … : What about transplantation? Though this session focuses on dialysis for younger patients, transplantation is best Ask your doctor if you might be a transplant candidate … though sadly, many are not We run separate transplant education sessions … but, briefly …

Options in Transplantation : Options in Transplantation Cadaveric transplantation (~60%) Living donor transplantation (~40%) Living related Mother/Father/Sibling/Son/Daughter Living un-related Spousal “The altruistic donor’ But if you are a transplant candidate … you should attend the sessions devoted to this

Slide43 : Back to dialysis … And the next two slides are important They are not a pleasant ones But they matter… and they have to be said

We cannot always promise an easy time : We cannot always promise an easy time REMEMBER, things can and do go wrong.... Not everything will always go to plan but, do not despair if a problem arises We will work to smooth your way as best we can for there are many ways to get out of trouble Always remember that those around you do wish the best for you and are always trying to do the best they can to help you

But, if things go very wrong …? : But, if things go very wrong …? Consider appointing an “Enduring Power of Attorney” from among your closest, most trusted relatives or friends Someone to make your medical treatment decisions if you are unable to do so yourself Someone who will make a decision to: ‘go on’ if there is reasonable hope But, to … ‘let go’ if all there is left is pain and discomfort

The courage to say ‘enough is enough’ : The courage to say ‘enough is enough’ This is never easy … BUT … Dialysis isn’t always able to ensure the quality of life you wish, need or deserve If it all becomes too much … it is OK to say no! So, especially for the older dialysis patients here … Talk to your family Let them know that it is OK, one day, to let go

Be sure … : Be sure … We will do our best … as long as we can We will let you (or your family) know if we think your burden is too great BUT … You must let us know if you feel like that too … We are in this together … so its important we always ‘row in the same direction’

So, what have we learned so far? : So, what have we learned so far?

Slide49 : You have learned what kidneys do You have seen why kidneys fail You have learned what happens if they fail You have learned that there are ways by which kidney failure can be delayed – but that it can’t be for ever … You now understand that there is much ‘preparation’ needed … for both dialysis and transplantation

Slide50 : You have seen that there are many helpful treatment options available Peritoneal dialysis and its options Haemodialysis and its options Transplantation and its options You understand that, if possible, home is best You understand that though things can go wrong, there are lots of ways to ‘save the day’ You know if all fails, we can elect a friend to make our final choices for us

Now, before we go on … : Now, before we go on … Agar’s explanation of How dialysis works with apologies to my beloved Geelong Football Club

Slide52 : There are two equal sized areas to watch from as the Geelong Football Team get ready to play like a well-oiled machine Gates Open @ 11.30 am

Slide53 : The crowd gathers to see the Geelong Football Team play like a well-oiled machine BUT One gate-keeper sleeps in! Only one area is open XXxXXxxxxX xxXXXXxxxX xxXXXXxxxx XxxXxXxXXX XxxxxXXXXX xxxxXXXx X

Slide54 : The game begins The Geelong Football Team AS IT ALWAYS DOES Is playing like a well-oiled machine XX XX x x XX X x x X x X x Xx X X x X X X x X XX X Xx X x x x x x x x x x x x xx x x x x x x

Slide55 : The Geelong Football Team CONTINUE playing like a well-oiled machine XX XX x x XX X x x X x X x Xx X X x X X X x X XX X Xx X xxxxx xxxxx xxxxx xxxxx

Slide56 : The Geelong Football Team UNDOUBTEDLY is kicking goal after goal X X X X X X X X X X X X X X x x x x x x x x x x x x

Slide57 : The Geelong Cats Victorious again X X X X X X X X X X X X

What does this show ? : What does this show ? It shows the principles of dialysis Small wastes (like the kids in the example) cross from the crowded side (your blood) to the empty side (the dialysis fluid) if the two are separated by a barrier (a membrane) through which these wastes can pass If these wastes are continually removed once they have crossed from the blood to dialysis fluid, more and more will pass across, slowly cleaning the blood of wastes over time …

What was the MOST important word? : What was the MOST important word?

What was the MOST important word? : What was the MOST important word? TIME

There’s no escaping it … ‘Time Rulz’ : There’s no escaping it … ‘Time Rulz’ Time on dialysis is critical Nothing substitutes for it

To conclude : To conclude

Good dialysis is like good love-making : Good dialysis is like good love-making

Good dialysis is like good love-making : Good dialysis is like good love-making The longer … the better

Good dialysis is like good love-making : Good dialysis is like good love-making The longer … the better The slower … the better

Good dialysis is like good love-making : Good dialysis is like good love-making The longer … the better The slower … the better The gentler … the better

Good dialysis is like good love-making : Good dialysis is like good love-making The longer … the better The more often … the better The slower … the better The more often … the better

Question-time : Question-time ?