Organ donation is most precious gift you could ever give.
All of us that suffer from Cystic Fibrosis are at different stages of
the disease, from the start of lung deterioration to being sick enough
to need a transplant. For those of us who are successfully assessed
for transplant, this life-saving operation is our only chance. No
matter what stage we are currently at with CF somewhere down the line
we will need to think about transplantation and realistically this is
in all our futures.
The following graph shows the desperate shortage of heart and lungs available
for transplantation.
Because of a serious shortage of organs, many who need a transplant have
to wait a long time before they receive one. More than 6,000 people
in the UK are waiting on the list, struggling to cope with severe illness
and unpleasant treatment in the hope that a transplant will come in time
for them.
Fewer than 3,000 transplants are carried out each year and each year about
400 people die while they're waiting.
Choosing to be an organ donor is an individual choice. But sometimes
the reasons people give for not being a donor highlight common misunderstandings
or confusion about what's involved.
Some of the information
below is very graphic and if you are of a sensitive disposition then proceed
with caution.
• What exactly is organ donation and how
does it work?
• Why people may be put off.
• How can they really be sure that you're dead?
• Will they work as hard to save me if they
know I'm a donor?
• On a very personal note: Those who are
Left Behind.
What exactly is organ donation and how does it work?
Organ donation takes place when a person (the donor) and their next of
kin agree to the removal of, one or more of, the donor’s organs
after their death. The organ can be transplanted into someone else.
A person can donate many different organs, including: Heart, lungs, kidneys,
liver, pancreas, small bowel and tissue, this includes skin, bone, heart
valves and corneas.
The majority of donors are heart-beating donors. These are patients who
have died as a result of a severe head injury or brain haemorrhage which
has irreversibly damaged their brain and they are being kept alive on
a ventilator in an intensive care unit. They are certified dead by brain
stem testing (see The Tests below).
Why people may be put off:
Concerns such as fears of being used for experimentation,
or having an organ taken before you have actually died, sometimes stop
people from making the commitment to carry a donor card or join the NHS
Organ Donor Register. Among certain cultures factors such as funeral
rites and traditions, or beliefs that donating an organ means giving away
the spirit, also put people off being a donor.
Once people have the true facts, whatever their race, religion or culture,
they're far more likely to register as a donor.
How can they really be sure that you're dead?
Organs are only removed for transplantation once a person has
died. Very careful and reliable checks are made by independent,
senior doctors to ensure the patient is dead, including tests of brain
activity.
Brain stem death: The brain stem controls many of the body's vital functions,
such as breathing, and once it's irreparably damaged the person will never
recover.
Tests on the brain stem are used to establish death in patients who have
sustained irreversible damage to their brain stem. These tests are carried
out by specialist doctors at the patient's bedside. They show clearly
when a person is dead.
The Tests
- A very bright light is shone into the person's eyes to see if the
pupils react by constricting (a sign of life). Then a piece of
tissue or cotton wool is gently wiped across the cornea of the eye.
In life the cornea is very sensitive and this test would make you immediately
blink. But if the brain stem is dead there's no reaction.
- After this, intense pressure is applied to the forehead and the nose
is pinched to see if the person registers pain. Ice-cold water is then
syringed into each ear, which in life causes the eyes to move.
- The patient is then tested to see if they gag or cough when their
throat is stimulated.
- Finally the ventilator is turned off for about ten minutes to see
if the patient starts to breathe on their own.
In brain stem death there's no reaction to any of these tests. The patient will be certified dead after the first set of tests. - The same tests are then repeated later by another senior doctor as an extra check. If still negative, the person will be confirmed dead and can then go on to become an organ donor.
Will they work as hard to save me if they know I'm
a donor?
The facts are that when you're ill in hospital, the medical team looking
after you is solely intent on getting you better and home. When
they're treating you, their duty is to you and your wellbeing, not to
anyone else.
It's only after death that the medical team might consider organ donation.
A donor transplant co-ordinator will be called who will discuss
the possibility of organ donation with the family. If the person's family
have agreed to donation then an entirely different, independent team of
doctors are called in to remove the organs.
The transplant team of doctors are never involved in the certification
of death on any patient. It's only once the patient has died and consent
for donation has been obtained that they become involved. This helps
to ensure that there can be no conflict of interest
On a very personal note: Those who are Left Behind:
Friends for Life wishes to acknowledge the agonising grief of the people
who have lost a loved one whose organs were donated and made a transplant
possible.
Please read some of the personal stories on the ‘My life, my story’
page to understand what this ‘second chance’ of life has meant
for the people here and what this precious gift really means to them.
Unfortunately, grief is something that many people with CF understand.
This is because not only have we lost far too many friends with
the disease but many of us have siblings who have died from CF.
To join the organ donor register click here Sign
up or for general information on becoming a donor, see our section
– ‘How can I become a donor?’