The Liver Life Project
Liver Transplant
So, you’ve had the Varices and that’s been taken care of…. For the time being. You’ve gone through the Ascites, and that’s being drained off every few weeks.
The Hepatic Encephalopathy is getting worse and is driving you and the family to despair. You’ve had five tumours,
three of which have been burnt off using the
ablation procedure. You’ve now got type 2 diabetes and you’re having to check your blood sugars four times a day, and inject yourself with insulin twice a day.
If that wasn’t enough, your overall general health is
going down-hill fast. Your life clock is now ticking,
and those tiny grains of sand are seeping through the hourglass of your life. After all, you’ve gone
through, there’s still one big problem you’ve yet to somehow overcome. For me, that one big problem
was an immense feeling of unworthiness and guilt.
After all, I was the one who caused all this to happen,
no-one else. No one forced that drink down my throat. So, I had brought all this all upon myself, and I felt
I had to suffer the consequences. Fortunately for us all there’s one final last chance. There is the
possibility of a Liver Transplant. But even going down this road is full of uncertainties.
Firstly, this is a gift and not
a right. There are people out there in need of a transplant through no fault of their own i.e. Steatosis or Primary Sclerosing Cholangitis.
The liver transplant list doesn’t discriminate, it goes on availability, match suitability and other factors,
like how urgent your need is.
But before any of this can start there are certain criteria and conditions that a person has to meet before they’ll be accepted on
to the waiting list. The NHS has a
very strict code of practice about this:
https://www.nhs.uk/conditions/liver-transplant/who-can-have-it/
Under UK regulations you are usually only considered a suitable candidate for a liver transplant if you meet two conditions:
• Without a liver transplant, it is highly likely that your expected lifespan would be shorter than normal, or your quality of life is so poor as to be intolerable.
• It's expected that you have at least a 50% chance of living at least five years after the transplant with an acceptable quality of life.
Transplant centres use a scoring system to calculate the risk of a person dying if a transplant isn't performed. In the UK, the system is known as the United Kingdom
Model for End-Stage Liver Disease (UKELD). This is based on the result of a series of
four blood tests that create an average score. The higher you’re UKELD score and
your risk of death, the higher up the waiting list you will be.
Assessing your quality of life
Assessing your quality of life can be a subjective process. However, the following symptoms represent a decline in quality of life that many people would find
intolerable:
• persistent tiredness, weakness and immobility
• swelling of the abdomen, caused by a build-up of fluid (ascites), that doesn't respond to treatment
• persistent and debilitating shortness of breath
• damage to the liver that affects the brain (hepatic encephalopathy), leading to mental confusion, reduced levels of consciousness and, in the most
serious of cases, coma
• persistent itchiness of the skin
Estimating survival rates
The assessment of your likely survival rate is based on:
• your age (some transplant centres say that 65-years of age is the cut off age)
• whether you have another serious health condition, such as heart disease
• how likely a donated liver would remain healthy after the transplant
• your ability to cope (physically and mentally) with the effects of surgery and the side effects of immunosuppressant medication
Tests will also be carried out to assess your health and your likelihood of survival. This can include examining your heart, lungs, kidneys and liver, as well as checking for
any signs of liver cancer.
Who can't have a liver transplant?
Even if you meet the above criteria, you may not be considered for a transplant if you have a condition that could affect the chances of success. For example, it's unlikely
that you will be offered a liver transplant if you have:
• Severe malnutrition and muscle wasting
• An infection – it would be necessary to wait for the infection to pass
• AIDS (the final stage of an HIV infection)
• A serious heart and/or lung condition, such as heart failure or chronic obstructive pulmonary disease (COPD)
• Serious mental health or behavioural condition that means you would be unlikely to be able to follow the medical recommendations for life after a liver
transplant
• Advanced liver cancer – by the time cancer has spread beyond the liver into surrounding tissue, it's too late to cure the cancer with a transplant. Additionally, a
liver transplant will not be offered if you continue to misuse alcohol or drugs. Most transplant centres only consider a person for a transplant if they haven't had alcohol
or used recreational drugs for at least six months.
Types of liver transplant
There are three main ways a liver transplant can be carried out:
• Deceased organ donation – involves transplanting a liver that has been removed from a person who died recently.
• Living donor liver transplant –a section of liver is removed from a living donor; because the liver can regenerate itself, both the transplanted section and the
remaining section of the donor's liver can regrow into a normal-sized liver.
• Split donation – a liver is removed from a person who died recently and is split into two pieces; each piece is transplanted into a different person, where they will
grow to normal size.
Most liver transplants are carried out using livers from deceased donors.
Waiting for a liver
There are more people in need of a liver transplant than there are donated livers, which means there is a waiting list. The average waiting time for a liver transplant is
145 days for adults and 72 days for children. While you're on the waiting list, you will need to keep yourself as healthy as possible and be prepared for the transplant
centre to contact you at any moment, day or night. You should also keep the transplant centre informed about any changes in your circumstances, such as changes in
your health, address or contact details.
Life after a liver transplant
Your symptoms should improve soon after the transplant, but most people will need to stay in the hospital for up to two weeks. (I was in for a total of nine days.)
Recovering from a liver transplant can take a long time, but most people will gradually return to many of their normal activities within a few months. You'll need
regular follow-up appointments to monitor your progress and you'll be given immunosuppressant medication that helps to stop your body rejecting your new liver.
These usually need to be taken for life.
Risks of a liver transplant
The long-term outlook for a liver transplant is generally good. More than nine out of every 10 people are still alive after one year, around eight in every 10
people live for at least five years, and many people live for up to 20 years or more. However, a liver transplant is a major operation that carries a risk of some
potentially serious complications. These can occur during, soon after, or several years after the procedure. Some of the main problems associated with liver
transplants include:
• Your body rejecting the new liver.
• Bleeding (haemorrhage)
• The new liver not working within the first few hours (primary non-function), requiring a new transplant to be carried out as soon as possible.
• An increased risk of picking up infections.
• Loss of kidney function.
• Problems with blood flow to and from the liver.
• An increased risk of certain types of cancer – particularly skin cancer.
There is also a chance that the original condition affecting your old liver will eventually affect your new liver. I would also like to point out that some people can go on
to suffer from mental health issues. These can include, “
Survivors
Guilt” and PTSD. I suffered with “Survivors Guilt” for over ten months. There is sadly little or no help
available out there within the local communities.
Survivor’s Guilt
The Queen Elizabeth Hospital, Birmingham
The Queen Elizabeth (QE) hospital is where I had my life-saving liver transplant carried out. It is also the home of Birmingham University, which is at the forefront into
liver research.
I was going to include here an American video of a liver transplant. But decided that this might not be suitable for some
people. Here a friend of mine, Mr Alan Hyde talks about his liver journey. Although his journey isn’t alcohol-related, by the
time a person gets to this stage with their liver condition. It doesn’t matter what the cause was as the associated medical
conditions are all the same. Sadly, Alan is nolonger with us. He past away due to kidney failure in September 2020. Alan was
a wonderful ambassabor for the QE Hospital, Birmingham. And helped many people over the years.
This video also introduces a lovely new piece of kit called a liver perfusion machine. All is explained in this video. When this machine was first brought into service, it
was found that it placed an enormous amount of pressure onto stored blood reserves. Trials took place to try and use synthetic blood, but this didn't prove to be very
successful.
A word of warning
A person who ends up having alcohol-related liver disease has two battles going on. Firstly, there are the physical issues, like the damage being caused to the body,
and then there’s the mental issue too. If a person requires a liver transplant due to alcohol abuse, and hasn’t consumed any alcohol for over six months, but
continues to drink alcohol-free beers, wines, and spirits as an alternative, then they still won’t be considered suitable for a liver transplant as the risk of relapsing is
considered to be too big.
I
personally
struggled
with
“Survivors
Guilt”
following
my
liver
transplant
back
in
2016.
This
dark
cloud
lasted
for
10
months.
I
hate
to
admit
this,
but
I
did
harbour
suicidal
thoughts
at
times,
such
was
my
depressional
state.
I
can
certainly
see
how
others
would
reach
out
to
their
old
friend,
the
bottle
in
an
attempt
to
lift
the
gloom.
Strangely
enough,
not
everyone
experiences
this
condition.
So
much
research
into
this
condition
is
urgently
needed
as
I
believe
that
liver
transplant
patients
have
a
higher suicide rate than any other organ transplant.
At
the
time,
I
would
feel
so
unworthy
of
this
second
chance
of
life.
I
was
63
when
I
had
my
transplant.
I
knew
back
then
that
a
newly
harvested
liver
could
be
split
and
shared
between
two
young
children
who
needed
a
liver
transplant.
They
had
their
whole
lives
in
front
of
them
and
I
felt
that
with
me
having
this
liver,
I
was
denying them of a future. I felt selfish and unworthy. This deep feeling of guilt would bring on a tearful response out of the blue, for no other reason.
As
I
mentioned,
upon
discharge
from
the
hospital,
we
are
told
to
avoid
certain
places
of
prime
risk
from
airborne
infection.
GP
surgeries,
other
hospitals,
etc.
There
was
nowhere
to
turn
for
help
or
support.
Even
my
local
“Mind”
mental
health
charity
had
a
six-month referral wait time.
I
happened
to
speak
with
one
of
the
then
hepatologists
at
the
QE
Hospital
Birmingham
about
this.
He
tried
to
help
but
didn’t
really.
He
told
me
that
he
was
pleased
to
hear
this.
He
went
on
to
say
that
the
decision
to
offer
me
that
liver
was
his
and
that
he
was
glad
to hear that I felt this way as it told him that I’d never abuse alcohol again and that he had made the right decision.
This
dark
cloud
went
on
for
about
10
months.
Until
I
happened
to
come
across
a
book
entitled,
“The
Inflamed
Mind”
by
Prof
Ed
Bullmore.
(I
still
have
it
and
have
given
away
6
copies
over
the
years).
In
this
book,
Prof
Ed
explains
how
any
physical
assault
upon
the
body
will
cause
an
inflammatory
response
by
the
immune
system.
Here
he
tells
of
how
cytokines
go
off
in
search
of
any
invading
bacteria
and
how
the
macrophage
cells
devour
these.
He
talks
of
how
it’s
been
discovered
that
the
cytokines
can
cross
over the blood-brain barrier, and alter a person's mental state.
Knowing this, allowed me to understand that this depressional cloud and my emotional feelings were none of my own making, but
due to a chemical response of the operation by the immune system. In other words, these thoughts weren’t real. This gave me
closure and allowed me to move on. Two days after this realisation, that dark cloud was gone.
The Liver Life Project
Liver Transplant
A word of warning
A person who ends up having alcohol-related liver disease has two battles going on. Firstly, there are the
physical issues, like the damage being caused to the body, and then there’s the mental issue too. If a person
requires a liver transplant due to alcohol abuse, and hasn’t consumed any alcohol for over six months, but
continues to drink alcohol-free beers, wines, and spirits as an alternative, then they still won’t be considered
suitable for a liver transplant as the risk of relapsing is considered to be too big.
So, you’ve had the Varices and that’s been taken care of…. For the time being. You’ve gone through the Ascites,
and that’s being drained off every few weeks. The Hepatic Encephalopathy is getting worse and is driving you and
the family to despair. You’ve had five tumours,
three of which have been burnt off using the ablation procedure.
You’ve now got type 2 diabetes and you’re having to check your blood sugars four times a day, and inject yourself
with insulin twice a day.
If that wasn’t enough, your overall general health is
going down-hill fast. Your life clock is now ticking, and
those tiny grains of sand are seeping through the
hourglass of your life. After all, you’ve gone through,
there’s still one big problem you’ve yet to somehow
overcome. For me, that one big problem was an
immense feeling of unworthiness and guilt.
After all, I was the one who caused all this to happen, no-one else.
No one forced that drink down my throat. So, I had brought all this all upon myself, and I felt I had to suffer the
consequences. Fortunately for us all there’s one final last chance. There is the possibility of a Liver Transplant.
But even going down this road is full of uncertainties.
Firstly, this is a gift and not
a right. There are people out there in need of a transplant through no fault of their
own i.e. Steatosis or Primary Sclerosing Cholangitis. The liver transplant list doesn’t discriminate, it goes on
availability, match suitability and other factors,
like how urgent your need is.
But before any of this can start there are certain criteria and conditions that a person has to meet before they’ll
be accepted on
to the waiting list. The NHS has a very strict code of practice about
this:
https://www.nhs.uk/conditions/liver-transplant/who-can-have-it/
Under UK regulations you are usually only considered a suitable candidate for a liver transplant if you meet two
conditions:
• Without a liver transplant, it is highly likely that your expected lifespan would be shorter than normal, or
your quality of life is so poor as to be intolerable.
• It's expected that you have at least a 50% chance of living at least five years after the transplant with an
acceptable quality of life.
Transplant centres use a scoring system to calculate the risk of a person dying if a transplant isn't performed. In
the UK, the system is known as the United Kingdom Model for End-Stage Liver Disease (UKELD). This is based on
the result of a series of
four blood tests that create an average score. The higher you’re UKELD score and your
risk of death, the higher up the waiting list you will be.
Assessing your quality of life
Assessing your quality of life can be a subjective process. However, the following symptoms represent a decline in
quality of life that many people would find intolerable:
• persistent tiredness, weakness and immobility
• swelling of the abdomen, caused by a build-up of fluid (ascites), that doesn't respond to treatment
• persistent and debilitating shortness of breath
• damage to the liver that affects the brain (hepatic encephalopathy), leading to mental confusion,
reduced levels of consciousness and, in the most serious of cases, coma
• persistent itchiness of the skin
Estimating survival rates
The assessment of your likely survival rate is based on:
• your age (some transplant centres say that 65-years of age is the cut off age)
• whether you have another serious health condition, such as heart disease
• how likely a donated liver would remain healthy after the transplant
• your ability to cope (physically and mentally) with the effects of surgery and the side effects of
immunosuppressant medication.
Tests will also be carried out to assess your health and your likelihood of survival. This can include examining
your heart, lungs, kidneys and liver, as well as checking for any signs of liver cancer.
Who can't have a liver transplant?
Even if you meet the above criteria, you may not be considered for a transplant if you have a condition that
could affect the chances of success. For example, it's unlikely that you will be offered a liver transplant if
you have:
• Severe malnutrition and muscle wasting
• An infection – it would be necessary to wait for the infection to pass
• AIDS (the final stage of an HIV infection)
• A serious heart and/or lung condition, such as heart failure or chronic obstructive pulmonary
disease (COPD)
• Serious mental health or behavioural condition that means you would be unlikely to be able to
follow the medical recommendations for life after a liver transplant
• Advanced liver cancer – by the time cancer has spread beyond the liver into surrounding tissue, it's
too late to cure the cancer with a transplant
Additionally, a liver transplant will not be offered if you continue to misuse alcohol or drugs. Most
transplant centres only consider a person for a transplant if they haven't had alcohol or used recreational
drugs for at least six months.
Types of liver transplant
There are three main ways a liver transplant can be carried out:
• Deceased organ donation – involves transplanting a liver that has been removed from a person who
died recently.
• Living donor liver transplant –a section of liver is removed from a living donor; because the liver can
regenerate itself, both the transplanted section and the remaining section of the donor's liver can
regrow into a normal-sized liver.
• Split donation – a liver is removed from a person who died recently and is split into two pieces; each
piece is transplanted into a different person, where they will grow to normal size.
Most liver transplants are carried out using livers from deceased donors.
Waiting for a liver
There are more people in need of a liver transplant than there are donated livers, which means there is a waiting
list. The average waiting time for a liver transplant is 145 days for adults and 72 days for children. While you're on
the waiting list, you will need to keep yourself as healthy as possible and be prepared for the transplant centre to
contact you at any moment, day or night. You should also keep the transplant centre informed about any changes
in your circumstances, such as changes in your health, address or contact details.
Life after a liver transplant
Your symptoms should improve soon after the transplant, but most people will need to stay in the hospital for up
to two weeks. (I was in for a total of nine days.) Recovering from a liver transplant can take a long time, but most
people will gradually return to many of their normal activities within a few months. You'll need regular follow-up
appointments to monitor your progress and you'll be given immunosuppressant medication that helps to stop
your body rejecting your new liver. These usually need to be taken for life.
Risks of a liver transplant
The long-term outlook for a liver transplant is generally good. More than nine out of every 10 people are still alive
after one year, around eight in every 10 people live for at least five years, and many people live for up to 20 years
or more. However, a liver transplant is a major operation that carries a risk of some potentially serious
complications. These can occur during, soon after, or several years after the procedure. Some of the main
problems associated with liver transplants include:
• Your body rejecting the new liver.
• Bleeding (haemorrhage)
• The new liver not working within the first few hours (primary non-function), requiring a new transplant to
be carried out as soon as possible.
• An increased risk of picking up infections.
• Loss of kidney function.
• Problems with blood flow to and from the liver.
• An increased risk of certain types of cancer – particularly skin cancer.
There is also a chance that the original condition affecting your old liver will eventually affect your new liver.
I would also like to point out that some people can go on to suffer from mental health issues. These can include,
“
Survivors
Guilt” and PTSD. I suffered with “Survivors Guilt” for over ten months. There is sadly little or no help
available out there within the local communities.
Survivor’s Guilt
I personally struggled with “Survivors Guilt” following my liver transplant back in 2016. This dark cloud lasted
for 10 months. I hate to admit this, but I did harbour suicidal thoughts at times, such was my depressional
state. I can certainly see how others would reach out to their old friend, the bottle in an attempt to lift the gloom.
Strangely enough, not everyone experiences this condition. So much research into this condition is urgently
needed as I believe that liver transplant patients have a higher suicide rate than any other organ transplant.
At the time, I would feel so unworthy of this second chance of life. I was 63 when I had my transplant. I knew
back then that a newly harvested liver could be split and shared between two young children who needed a
liver transplant. They had their whole lives in front of them and I felt that with me having this liver, I was
denying them of a future. I felt selfish and unworthy. This deep feeling of guilt would bring on a tearful response
out of the blue, for no other reason.
As I mentioned, upon discharge from the hospital, we are told to avoid certain places of prime risk from
airborne infection. GP surgeries, other hospitals, etc. There was nowhere to turn for help or support. Even my
local “Mind” mental health charity had a six-month referral wait time.
I happened to speak with one of the then hepatologists at the QE Hospital
Birmingham about this. He tried to help but didn’t really. He told me that he was
pleased to hear this. He went on to say that the decision to offer me that liver was
his and that he was glad to hear that I felt this way as it told him that I’d never
abuse alcohol again and that he had made the right decision. This dark cloud went
on for about 10 months. Until I happened to come across a book entitled,
“The Inflamed Mind” by Prof Ed Bullmore. (I still have it and have given away 6
copies over the years). In this book, Prof Ed explains how any physical assault
upon the body will cause an inflammatory response by the immune system. Here
he tells of how cytokines go off in search of any invading bacteria and how the
macrophage cells devour these. He talks of how it’s been discovered that the cytokines can cross over the
blood-brain barrier, and alter a person's mental state.
Knowing this, allowed me to understand that this depressional cloud and my emotional feelings were none of my
own making, but due to a chemical response of the operation by the immune system. In other words, these
thoughts weren’t real. This gave me closure and allowed me to move on.
Two days after this realisation, that dark cloud was gone.
The Queen Elizabeth Hospital, Birmingham
The Queen Elizabeth (QE) hospital is where I had my life-saving liver transplant carried out. It is also the home of
Birmingham University, which is at the forefront into liver research.
I was going to include here an American video of a liver transplant. But
decided that this might not be suitable for some people. Here a friend of
mine, Mr Alan Hyde talks about his liver journey. Although his journey
wasn’t alcohol-related, by the time a person gets to this stage with their
liver condition. It doesn’t matter what the cause was as the associated medical conditions are all the same.
Sadly, Alan is nolonger with us. He past away due to kidney failure in September 2020. Alan was a wonderful
ambassabor for the QE Hospital, Birmingham. And helped many people over the years.
This video also introduces a lovely new piece of kit called a liver perfusion machine. All is explained in this video.
When this machine was first brought into service, it was found that it placed an enormous amount of pressure
onto stored blood reserves. Trials took place to try and use synthetic blood, but this didn't prove to be very
successful.
