welcome to my site on liver transplants

    a personal view from a transplant patient

          INTRODUCTION

UPDATED  26 January 2001                                   

            GENERAL INFORMATION ABOUT THE LIVER

The liver is the largest organ in the human body, weighing about three pounds (1.5kg).

 It lies next to the stomach in the upper right part of the abdomen below a thin sheet of muscle known as the diaphragm.

The liver has many vital functions, these include storing sugars and releasing them into the blood or converting them into useful chemicals, building proteins, and cleaning the blood of poisons before disposing of them in bile (digestive liquid secreted by the liver).

The heat produced from all of these activities helps to maintain your temperature, it has an amazing capacity to regenerate itself, and will function normally with only a small portion in working order and you can survive with only half a liver.

It is a very uncomplaining organ-if it is not working properly you may not even know!

          FUNCTIONS OF THE LIVER 

• Converts food into chemicals necessary for life and growth

• Produces quick energy when it is needed

• Manufactures new body proteins

• Prevents shortages in body fuel by storing sugars, vitamins and minerals

• Aids the digestive process by producing bile

• Digests fat

• Neutralises and destroys poisons

• Controls the production of cholesterol

• Maintains hormone balance

• Stores iron

• Regenerates its own tissue

• Helps the body resist infection by producing immune factors

When everything is functioning well there is no problem but when things start to go wrong that is a different matter as I found out only too well myself !

I had been ill for about four years with a constant swelling of the stomach (called ascites) and severe weight loss.

This eventually led to a consultation with a professor at the Queen Elizabeth Hospital in Birmingham.

After numerous tests I was informed that I needed a liver transplant. My first reaction was: could I go through with this?, how would I cope? But without it I had only been given a maximum of 2 years to live. With no future at all to look forward to the decision was made to go ahead with this, and being only 49 years of age I owed this to my wife and son.

I was then put on a transplant list and was on call 24 hours a day waiting for a suitable donor. From  then on, every time the phone rang the thought went through my mind was it the hospital with the news I had been waiting for?.

After approximately two months such a call was received. I made my way to the hospital and  after undergoing various tests to make sure I was well enough for the operation I was then informed that the donor liver was not up to the standard required for transplantation.

This was certainly a big setback after the emotions of preparing for the operation, but it was explained at my initial assessment that this situation may arise.

After returning home, life tried to go on as normal, still waiting for that phone call.

As time went by, my condition was slowly deteriorating and the thought went through my mind --- would a donor be found in time before I was too ill to withstand the operation?.                                                                                                                                                                        

          OPERATING DAY INTENSIVE CARE AND POST OPERATION

Some four months later another call was received. This time, I hoped and prayed that everything would go ahead.

Again I had to have various tests and was passed fit to undergo the transplant.

The donor liver this time was very good and the operation was to proceed. No turning back now and it was at this point that I started asking myself questions, would the operation be successful? How would it change my life? Who had just died to give me another chance of life?.

The operation itself took over 7 hours, after which I was transferred to the I.T.U. (intensive therapy unit).

This was a very worrying time as the next few hours were critical, would there be any signs of rejection? This is quite common in most people but with various drugs this can be counteracted.

After approximately 36 hours I was transferred to the High Dependency Unit under constant medication and monitoring. My stay in here was for 4 days. I was still feeling very week and sore but grateful that it was all over.

I was then moved onto a general ward and after getting my mobility back I was allowed home after just 8 days, thankful to be alive.

I now have regular check-ups, and medication every day but this is a small price to pay in order to have my life back again.

Words alone cannot express my heartfelt thanks to the donor and all the medical staff for their help and support during this trying time in my life.

A special thanks to all the donors in the past who have donated their organs for transplantation to give someone else the chance of a new life. May god bless you all.

I hope that anyone who is reading this and is awaiting a transplant has been reassured after being given an insight into my own experience.

If I can be of any assistance or help in any way please feel free to get in touch with me, It would be great to hear from you.

My e mail address reserved for this is alanliver@aol.com.

If any of you are thinking about becoming a donor I hope that reading about my experience has shown you what a very precious gift it would be.

I hope that this site has been of value to any patient awaiting transplantation.

                                                                                                        Sincerely,

                                                                                                            Alan.

                                                                                                Become a donor 

                                                                                                       NOW   

                                                   Questions and answers on liver transplantation 

                                                             (REPRODUCED FROM  INFORMATION SHEET SUPPLIED BY BRITISH LIVER TRUST)    

Q    What diseases are treated by liver transplantation?

A    A large number of diseases are capable of interfering with the liver's function sufficiently to threaten a persons life. Most are potentially treatable by transplantation. In adults, primary biliary cirrhosis and primary sclerosing cholangitis, chronic diseases which destroy small bile ducts within the liver, are common reasons for transplantation. Chronic viral hepatitis, a disease which destroys liver tissue over a period of years is also important.  

Q    What about alcohol-related liver disease?

A    Most people who develop cirrhosis of the liver due to excessive use of alcohol do not need a liver transplant. Abstinence from alcohol and treatment of complications will usually allow them to live without the need for a transplant. For those who have abstained for an agreed period of time and whose condition warrants it transplantation may be considered.

Q   What about cancer of the liver?

A    Most cancers of the liver begin somewhere else in the body and spread to the liver. These are not treatable with a liver transplant because it would not prevent recurrence of the disease. Tumors which start in the liver have usually spread to other organs by the time they are detected, and are rarely cured by liver transplantation. (for further information on primary liver cancer please contact the British Liver Trust), see website at bottom.

Q    Are there alternative treatments for liver disease?

A    There are effective medicines for some liver diseases, while for others only treatment for complications is available. Often medical treatment delays, but does not eliminate, the need for transplantation. 

Q   Is liver transplantation a treatment of last resort, when everything else has failed?

A   Yes and no. If medical treatment is likely to allow prolonged survival with good quality of life, transplantation would be reserved for the future. However, ideally the surgery is undertaken before the terminal stage of the disease when the person is too ill to withstand major surgery.

Q   How is the decision made to transplant?

A   This is a decision made in consultation with all individuals involved in the patient's care, including the patient and family. Their input is vital as they should clearly understand the risks involved.

Q   What are the major risks?

A   Before surgery, these are mainly the development of some acute complication of the disease which might make surgery too risky. There are also risks common to all forms of major surgery, as well as technical difficulties in removing the diseased liver and implanting the donor liver, and the consequences of briefly being without any liver function at all.

Immediately after the operation, bleeding, poor function of the grafted liver, and infection are major risks. The patient is carefully monitored for several weeks for signs of rejection of the liver.

Q   What are the overall chances of surviving a liver transplant?

A   This depends on many factors such as the age and general health of the patient and also the disease.

The exact figure varies from one disease to another and at what stage in the disease transplantation is performed. Survival rates and centre's performing transplantation have significantly increased in the last decade.

Q   How long does it take to recover?

A   In part this depends on how ill the individual was prior to the surgery. Most patients spend a few days in an intensive care unit and about two to three weeks in hospital.

Q   What happens during this recovery period?

A    Initially in the intensive care unit all body functions including liver function are carefully monitored.

Once patients are transferred to the ward the frequency of blood testing and other investigations decreases. Normal eating is encouraged and physiotherapy is used to restore muscle strength. Medicine to prevent rejection of the new liver is initially given by injection, but later in tablet form. During the first six weeks after transplantation, frequent tests are done to monitor liver function and detect any evidence of rejection.

Q   If a transplanted liver fails to function, or is rejected, what can be done?

A   There are varying degrees of failure of the liver, and even with imperfect function the patient will remain quite well. Occasionally a failing transplanted liver can be replaced by a second (or even third) transplant.

Unfortunately, there is no dialysis treatment for liver. Whereas a person with kidney failure can be maintained on an artificial kidney machine until a suitable time for transplantation, no such artificial liver is available.

Q   What side effects do patients commonly experience from the medicines used to treat or prevent rejection?

A   All the drugs used for rejection increase the person's susceptibility to infections (and possibly to the development of tumors). Various medicines are used, and each has its own effects. Cortisone-like drugs produce some fluid retention and puffiness of the face, risk of worsening diabetes and osteoporosis (loss of mineral from bone).Cyclosporin  A produces some tendency to high blood pressure, and a growth of body hair. The dose of  this is very carefully regulated. Kidney damage can occur from cyclosporin but this can usually be avoided by monitoring the drug levels in the blood. Two new drugs are also being used - Prograf (or fk506) and Neoral (a new presentation of cyclosporin). Which drug is used depends on a range of factors, including the circumstances of the transplantation, the individual patient's condition and the side-effects best tolerated. Clinicians will discuss the choices with their patient's and ensure the most appropriate immunosuppression for their lifestyle and personal requirements.

Q   Do recipients of liver transplants have to take these medicines for the rest of their lives?

A   Yes. However, as the body adjusts to the new liver, the amount of medicine needed to control rejection is reduced. 

Q   How frequent is the medical follow-up?

A   Routine follow-up consists of weekly then monthly clinic visits, including blood tests and blood pressure. Later these tests can be carried out by a local physician with annual or six monthly appointments at the transplant centre. 

Q   Are people who have had a transplantation more susceptible to other infections?

A   Patients are advised to take more care to avoid exposure to infections as their immune system is depressed.Any illness should be reported to their doctor immediately and medications should be taken under their doctor's advice.

Q   What about physical activity after a liver transplant?

A   Most people are able to resume normal or near-normal activities, and can participate in fairly vigorous physical exercise six to twelve months after a successful liver transplant. Sexual relationships can be resumed  when desired. 

Q   Can there be a recurrence of the original disease in the transplanted liver?

A   This depends on the original disease. Some types of viral hepatitis recur. Other diseases come back less often.This is not necessarily a major problem because of the slow progression of some liver diseases.

Q   Where do donated livers come from?

A   Livers are donated , with the consent of the next-of-kin, from individuals who are brain dead, usually as a result of a head injury or brain haemorrhage. When a donor is identified, transplant centres are contacted by computer network and arrangements are made to retrieve whatever organs may be donated.

Q   Do the donor and recipient have to be matched by tissue type, sex, age etc?

A   No. For liver transplants, the only requirements are that the donor and recipient need to be approximately the same size, and of compatible blood types. No other matching is necessary.

Q   How can I donate my organs?

A   You can register your willingness to become an organ donor with the N.H.S Organ Donor Register, by picking up a form at your GP surgery, local library, post office, via your driving licence application or by telephoning Freephone 0800 555 777. The register is held at the UK Transplant Support Services Association in Bristol, alongside the national database of people waiting for an organ transplant. It is important to discuss your decision with your family and next-of-kin.

       CIRRHOSIS

                       (REPRODUCED FROM  INFORMATION SHEET SUPPLIED BY BRITISH LIVER TRUST)

What is cirrhosis?

Cirrhosis is the result of continuous liver damage. Normally when the liver is acutely damaged the liver cells dieand the organ regenerates itself without scaring.

In cirrhosis, the process of healing fails and scar tissue develops. It is this process which leads to cirrhosis.

The blood supply to the liver is altered and the liver begins to have difficulty performing its functions.

Once it has developed, cirrhosis is irreversible, even if the underlying cause can be removed or eliminated.

Its progress can be slowed down or even halted with treatment.

What causes cirrhosis?

There are a number of conditions that can lead to cirrhosis:

• Loss of appetite

• Nausea and vomiting

• Weight loss

• Enlargement of the liver

• Itching

• Jaundice - yellow discolouration of the skin and whites of the eyes because bile pigment can no longer be removed by the liver

• Ascites - abdominal swelling due to accumulation of fluid

• Vomiting of blood - frequently occurs from swollen, ruptured varices (veins that burst) in the lower end of the gullet (oesophagus) because of increased pressure in these vessels caused by scar tissue formation within the liver

• Increased sensitivity to drugs - due to the liver's inability to process them

• Encephalopathy - subtle mental changes advancing to profound confusion and coma

However, many patients have no symptoms and are found to have cirrhosis by physical examination and laboratory tests performed in the course of investigations for an unrelated illness

How is cirrhosis diagnosed?

A doctor will first take a careful history, perform a physical examination and arrange for further tests and x-rays which will include:

            Liver function tests - a blood test to measure the activity of liver enzymes

            Imaging - which can be by x-ray, ultrasound, ct or MRI scan, or hepatic angiogram

            Biopsy - a liver biopsy is a small sample of tissue for examination under a microscope by A       pathologist

Does hepatitis always result in cirrhosis?

People with viral hepatitis can develop cirrhosis. There are several types of viral hepatitis, each caused by a different virus:

• Hepatitis B, which when it persists for more than six months (chronic hepatitis) in a small number of patients can lead to cirrhosis

• Hepatitis A and E do not lead to cirrhosis

• Hepatitis C becomes chronic in a high proportion of people and may lead to cirrhosis

• other hepatitis viruses are currently under investigation

Alcohol and cirrhosis

While almost everyone who drinks excessive amounts of alcohol sustains some liver damage, this does not necessarily develop into cirrhosis. Of those people who drink to excess about one third develop simple fatty liver and about one in ten develop cirrhosis. In general the more you drink the greater the frequency and excessive intake, the more likely cirrhosis will result. A poor diet may be a contributing factor.

Sensible drinking

The amount of alcohol that is safe for the liver is not known. Sensible limits minimise the risks of developing alcoholic liver damage. If you drink alcohol regularly, taking a day or two off without alcohol every week is thought to be beneficial.

Even social drinkers may develop alcoholic liver damage including cirrhosis. Women are known to be more susceptible to the effects of alcohol as far as long term liver damage is concerned. Individual susceptibility varies considerably.

How is cirrhosis treated?

Treatment depends on the type and stage of the cirrhosis. It aims at stopping the progress of the cirrhosis, reversing, to whatever extent possible, the damage which has already occurred, and treating complications that are disabling or life threatening. In some patients liver transplantation may be appropriate.

                                                    FINDING CURES AND TREATMENTS FOR LIVER DISEASE

The British Liver Trust is the only national charity in this country dedicated to fighting all adult liver diseases through research and education. Experts estimate that more than half of all liver diseases could be prevented if people acted upon the knowledge we already have.

After reading all this information on liver damage I ask the question ? Is excessive drinking really worth the risk of damaging your health, ONLY YOU CAN ANSWER THAT !

                  More information can be found at      www.qeh-liverunit.org

                  British Liver Trust                               www.britishlivertrust.org.uk