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. I f 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 following their liver transplant. 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 now all the same. Sadly, Alan is nolonger with us. He past away due to kidney failure in September 2020. Alan was a true ambassador for the Queen Elizabeth (QE) Hospital. He devoted his life to helping others at the QE in both a pre-liver and post-liver transplant setting. He was a lovely man. This video also introduces a lovely new piece of kit called a liver perfusion machine. All is explained in the 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   of   my   guilt.   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   I   must   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 by the immune system to the transplant operation. 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. I feel there is a need for this to be explained and discussed with future liver patients at the pre-transplant stage. Also there is a need to encourage patients post- transplant to open up more and share their emotional feelings. This may help prevent alcohol-relapes as people will seek comfort in self-medication as a coping mechanism. It may even help prevent attempted suicide. After all, this is all part of the healing process.