Liver Transplants, Transplants

WITHOUT DONORS THERE CAN BE NO TRANSPLANTS !

Thank you for visiting my website. I hope that by reading about my liver transplant it will give you some help, encouragement and support if you are having to face a liver transplant yourself.

liversupport@blueyonder.co.uk

Please Visit our Support Group Webpage WWW.UHBLSG.ORG.UK

INTRODUCTION.

Let me introduce myself. My name is Alan, ( photo inset ) and I reside in the UK. My Liver Transplant operation was performed at the Queen Elizabeth Hospital, Birmingham (UK) in August 1999. This website has been set up in the hope that it may be of help to other people who have had, or are facing a Liver Transplant. Please read my story below. If you would like to get in touch for any possible help or advice that I may be able to give you, please feel free to do so. I am also a member of the Liver Support Group at the Queen Elizabeth Hospital, My contact details above. Please note I am NOT medically qualified or have any medical experience so cannot answer questions relating to medical conditions. All information contained in this website has been obtained from information and literature provided by hospitals and other resources, medications and procedures are advancing all the time and it is advisable to contact your own doctor/consultant for further information. To see photographs of how I looked before and after transplant please see PHOTO GALLERY.

DISCLAIMER : All the content contained in this website has been obtained from resources freely available to anyone, it is intended only as a guide to liver patients E&OE . I am not medically qualified neither do I profess to be and therefore cannot answer questions relating to a medical nature, just a person who was fortunate enough to have received a liver transplant.

This website is for worldwide use but some aspects of the site may only be relevant to UK residents and some procedures may differ in your own country. It is intended only as a guide.

TO NAVIGATE THE SITE PLEASE SELECT PAGE OPTIONS ON LEFT. : PLEASE READ LISTINGS BELOW FOR THE FULL SITE CONTENTS.

TOPICS CONTAINED IN THIS WEBSITE.

Medical Condition.Operating Day.Intensive Care.Post Operation.Information about Liver.
Inhereted liver disease. Gallbladder & Gallstones. Cancer of the liver
Questions & Answers on Liver Transplantation.
Tests normally carried out during liver transplant assessment.
Different types of Scans, M.R.I. & C.T, X-ray, Ultra Sound :
Medical procedures. Blood Pressure.
Liver Biopsy, Paracentisis ( Ascites, draining off of fluid )
Laparoscopy. Endoscopy. Blood Tests.
Glossary of Liver Terms.
Cirrhosis : Fatty Liver : Alcohol & effects on the liver.
Alcohol abuse. Units of alcohol. Damage caused by alcohol.
The life you lead, precautions and health issues after a Transplant.
Organ Donation.
Primary Biliary Cirrhosis ( P.B.C.) :Diet and liver disease.(type of foods to avoid)
Photo Gallery :Photographs of myself before & after transplant & Diseased Livers.

MEDICAL CONDITION.

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 and biopsy 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 and the thought of not seeing my very young son grow up, 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 usually 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 weak 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 lovely to hear from you. If you would like to get in touch my contact details are ..... alanliver@blueyonder.co.uk 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 website has been of value to any patient awaiting transplantation. Sincerely, Alan.

WHAT IS A LIVER TRANSPLANT?

Liver transplantation is the surgical replacement of a diseased liver with a healthy liver. The indication for this operation is end-stage liver disease, characterized by patients suffering from reduced liver function, muscle loss, fatigue, encephalopathy, signs of portal hypertension, poor blood clotting and jaundice A variety of liver diseases can lead to end-stage liver disease. There are generally two main categories: those cases caused by viruses (Hepatitis B and C) and/or alcohol and those caused by problems concerning the bile ducts (primary biliary cirrhosis (PBC) and primary sclerosing cholangitis (PSC). There are other causes of end-stage liver disease, but they are less frequent. Prior to transplantation a liver transplant team evaluates potential liver recipients.

FUNCTIONS OF THE LIVER

Converts food into chemicals necessary for life and growth.
Production of certain proteins and growth factors.
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 and excretion of cholesterol.
Maintains hormone balance.
Storage of glycogen, Iron & blood clotting factors.
Conversion of glycogen to glucose if energy is needed.
Regenerates its own tissue.
Helps the body resist infection by producing immune factors.
Detoxification of many harmful chemicals.
Chemical modification of certain drugs used to treat disease.
Recycling contents of old blood cells and cleansing the blood.

GENERAL INFORMATION ABOUT THE LIVER,

The liver is the largest internal organ in the human body, weighing about three pounds (1.5kg) and is nearly as big as a rugby ball and is nearly conical in shape. 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 is the body's chemical factory with over 100 complex functions. It is second only to our brain in its complexity and is vital for life. The liver fights infection, makes essential chemicals and filters poisons. 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!

The first liver transplant was performed in 1963. In the early days this was a difficult operation which was only carried out in a few centres. In the last few years important advances have greatly improved the success of the operation and more people are being treated.

WHAT IS THE FUNCTION OF THE GALL BLADDER ? The gall bladder is that part of the digestive system which stores and secretes the bile salts that are used in the process of breaking down food into its adsorptive components. A lack of these salts leads to malabsorption maladies.The gall bladder is located on the right side of the body and is connected to the biliary tract system by the cystic duct.
When we eat, bile is added to the food as it passes out into the duodenum. Bile is stored in the gallbladder, which serves reservoir of bile. When we eat, fatty foods, the gallbladder contracts and pushes extra bile out through the common bile duct and into the duodenum. Bile breaks the fatty material of food into tiny fragments that can be more easily absorbed by the intestine.

WHAT IS A GALL STONE AND HOW ARE THE STONES FORMED IN THE GALLBLADDER ?

Gall stone is the stone which develops inside the cavity of gallbladder, they are lumps of solid material and resemble small stones or gravel, although some can be as large as pebbles, most are the size of a pea and can take years to develop.There are basically two types of gallstones. Most gallstones that occur in western civilizations are composed primarily of cholesterol. Therefore, ingestion of too much cholesterol is considered a risk factor. For women, the risk of cholesterol gallstones increases with age, use of oral contraceptive, rapid weight loss, family history of diabetes mellitus, and inflammatory bowel disease (Chrohn's disease and Ulcerative Colitis). The other types of stones are called pigmented stones. These are composed primarily of calcium bilirubinate. This is found in people who suffer from chronic hemolytic (the destruction of blood cells) states such as sickle cell disease. It is also commonly found in Asian and African populations. A family history of gallstones also increases the risk of stoneformation. In many cases, more than one of these factors plays a roll, but some people form stones without any known risk factors. Around 5 million people in the U.K. approximately 10 per cent of the population, develop gallstones or another gallbladder disease at some time in there lives.

INHERITED LIVER DISEASE.

It is possible to be born with a liver disease which may not produce symptoms until adulthood. Haemochromatosis disease is one example.Haemochromatosis is an inherited metabolic disorder in which the body absorbs and stores more iron from food than it actually needs. It can prove fatal if not recognised and treated early enough. For many years haemochromatosis was thought to be rare. But recent research has discovered that the disease is much more common than first realised. In fact it is one of the commonest inhereted disease among people of northern european origin and is estimated to affect 1 in 300. Wilson's disease is also inhereted and causes excessive amounts of copper to accumulate in the body. Copper, unlike other damaging metals such as lead and mercury, is essential to health. However, in Wilson's disease the body's inability to get rid of the excess results in an accumulation of copper in several organs. The liver is the first organ to store copper. When its storage capacity is exhausted, the overflow passes from the liver to the bloodstream and is carried to other organs, including the brain and the cornea of the eye. In a few cases the copper accumulation can result in psychiatric disorders or physical symptoms such as slurred speech, drooling or tremors.

CANCER OF THE LIVER.

Cancer of the liver is divided into two main types: primary cancer ( hepatocellular carcinoma ) which means cancer that starts in the liver and secondary or metastic cancer which means cancer that spreads to the liver from other parts of the body. In the U.K most people who develop primary liver cancer have cirrhosis which can be from any cause. Primary liver cancer is not easy to diagnose in the early stages because its symptoms are usually vague.Typical symptoms include loss of appetite, weight loss, a general feeling of poor health, jaundice, fever, fatigue, and weakness. In the U.K. alcohol is an important cause of primary liver cancer along with hepatitis B and C infection. For a more in depth look at different types of cancer and terminology please see separate heading under :CANCER OF THE LIVER & CANCER TERMS : This can be found on the Cirrhosis & Alcohol abuse page.

(Q) HOW IS A TRANSPLANT PERFORMED ?.

{A} The donor (the person the healthy liver comes from) must have the same blood group as the recipient and should ideally be under 50 years of age. In the case of child recipients it is best if the donor is a child of about the same age. The donor must not have any liver disease or cancer and must not be HIV-positive. In most cases the donor is dead and permission has been given to use his or her liver to transplant into someone else, but in some cases a live donor may give a part of his or her liver for transplantation. The remaining tissue will regenerate new liver tissue. These cases are called ‘split-liver’ transplants.
A liver transplant is a complicated procedure involving at least an eight-hour operation. The diseased liver has to be removed. Connections have to be made to the largest vein in the body (the portal vein that carries blood from the intestine to the liver), to the arteries supplying the liver with blood, and to the intestine for the bile duct which carries bile from the liver to the intestine.

{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 DISEASES? .........{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. Tumours 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)

{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} 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} 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 EXPERIENCS 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 tumours). 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), recently another drug now being used is called Cellcept. 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 TRANSPLANT 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} DO THE DONOR AND RECIPIENT HAVE TO BE MATCHED BY TISSUE TYPE, SEX, AGE, ETC ? ..... {A} No. For liver transplants the only requirement 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 G.P surgery, local library, post office, via your driving licence application or by telephoning Freephone 0800-555-777 or 0845-60-60-400 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.

If You would like to be put on the organ donor database please click on link below and it will take you to their website. This will be the greatest gift you will ever give.

http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/how_to_become_a_donor.jsp

For visiting my website, I hope that you have found the site of interest and help to you, and that it has given you the hope, reassurance and support of facing a liver transplant. Sincerely, Alan.

And a very special thank you also to all the medical team at the Queen Elizabeth Hospital Birmingham (UK ) who saved my life for which I will be eternally grateful , and I would like to dedicate this website to them and to all medical personel throughout the world, God bless you all.

Thank you to all donors past and present for your kind generosity, being a member of the transplant support team I see a lot of very poor people desperately in need of a transplant. When the transplant is done just for them to be able to live a normal life once again says it all. Without donors there are no transplants.

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Last updated 5th Sept 2007

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