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 best Ask your doctor if you might be a transplant candidate … though sadly, many are not We 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
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Slide54 : The game begins
The Geelong Football Team
AS IT ALWAYS DOES
Is playing like
a well-oiled machine XX XX x
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Xx X X x X X
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x x
x x x x x xx x
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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
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xxxxx
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Slide56 : The Geelong Football Team
UNDOUBTEDLY
is kicking goal after goal X X
X X X
X X X X
X X
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X
x x x
x x
x x
x x x
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x
Slide57 : The Geelong Cats
Victorious again X X
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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 ?