LIVER TRANSPLANTATION AND GENERAL SURGERY UNIT :
INFORMATION FOR PATIENTS

Through my own experience, I learnt that striving for a positive mental attitude will get you nowhere unless you have the ammunition to back it up.
You develop a positive mental attitude by being prepared, by understanding the realities of what it takes to succeed, and by being good at the necessary techniques.
It's a cycle : the more prepared a person is, the more positive his attitude, and, therefore, the better his chances of succeeding.

Robert J. Ringer

Delivering accurate information is not easy.
Giving this information in a reasonable manner is a challenge.
This information booklet is a first step : a general view on the events occuring before and after a hepatic graft.
A number of people have contributed to its editing, directly and indirectly.
We thank all the members of the medical and surgical transplantation teams, all the patients who were ready to share their knowledge and experience, as well as the authors of the articles, leaflets and books we consulted.

Prof.Jan.Lerut                           Francine Roggen
Physician in charge                    Clinical transplantation coordinator

Brussels, November 1994. Reviewed September 1998.

HISTORY

It was in 1963, in Denver (United States) that Thomas Starzl performed the first human liver transplantation. Forty years ago... Since then in this field, progress was immense; techniques have improved, more efficient anti-rejection drugs have been discovered. Knowledge has grown with each and every experience.
In Belgium, the first liver transplantation was performed by Professors Kestens and Otte in 1969.
The transplantation program was then interrupted in view of the mediocrity of results until 1984, when cyclosporin, the first good anti-rejection drug, was introduced.
In october 1998, the target of one thousand transplantations was reached.
Today, liver transplantation is not experimental any more. Surgery offers real chances for desperate cases.

Let us now go back to the reason of your presence in hospital.
You have a serious liver disease, and your liver is no simple organ.

THE LIVER

The liver is the largest organ of our body. It hides on the right side of the abdomen, behind the last ribs.
Its functions are multiple and essential for our body.
A few of these functions :
- the liver turns food in chemical substances who make us grow and live.
- the liver processes and eliminates drugs, alcohol and other substances which can be toxic for our body.
- the liver produces bile, a greenish liquid necessary for the absorption of fats and certain vitamins.
- the liver produces proteins which play an important role in blood clotting.
- the liver maintains some hormonal balances.

Living with a sick liver is certainly not easy. All these disrupted functions are responsible for a long list of symptoms, of which here are the most important ones :

Signs and symptoms of a liver disease :
- jaundice (the white part of the eyes and the skin become yellow),
- pruritus (all your skin is itchy, you scratch yourself),
- dark urine (like strong tea),
- white or light grey stools (putty-coloured),
- mental confusion or coma,
- ascitis (abnormal accumulation of water in the abdomen),
- blood vomiting,
- a tendency to bleed easily.

Our liver can deliver several signals which indicate that it is sick enough to justify a more thorough investigation.
Before the doctor decides that transplantation is the best solution, you will go through a series of exams.
So this is why you are hospitalised for a liver evaluation; I will call this stay (+/- 10 days) the pre-transplantation checkup.

MEDICAL EXAMS TO PERFORM

- Several blood tests will rate the functioning of your liver, hence confirming the diagnosis.
- Echo-doppler visualises the liver and will give a quality image of it, as well as of the neighboring vessels and organs.
- An abdominal CT-scan will calculate your liver's volume and indicate certain abnormalities that could interfere with the success of an operation.
- Endoscopy will give information on the status of your stomach and oesophagus, it will also show the existence of oesophagal or stomach varices.
- Electro-encephalogram (EEG) can sometimes show certain mental dysfunctions (slowness or coma), even discrete, which find their origin in the liver problem.
- A neuropsychiatric evaluation consists in a series of tests who show the impact of the disease on your perceptions, your reflexes, your judgment, your memory.
- In the ophtalmology service, the disease's effect on your eyes will be rated.
- The aminopyrine test will give the physicians a precise idea of the liver function you still have.
- Pulmonary and cardiac tests are mandatory. An effort electrocardiogram, an echocardiography, a pulmonary capacity test will show if your body can stand up to a long operation with prolonged anaesthesia.

I can hear you sigh, and I understand... there really are a lot of tests to undergo, and some are not pleasant. Sometimes, the physicians have to add some more. For example, if the echodoppler shows an unreadable image of the big vessels, you will have to undergo an arteriography.
However, the whole team will be there to help you : inform you, if possible support you, ensure your comfort and answer your questions.

And then, just as you are resting a little in between two tests, the social worker arrives. A bit later, the clinical coordinator or one of the interns comes to see you. All of them are there to help you, they all have lots of questions to ask as well as answers to give you. A lot of talking is necessary !
And so, while talking, you have the opportunity to meet the different members of the multi-disciplinary team : the professors, the physician in charge, his assistants, the social worker, the coordinator, the psychologist, the dietician. It is important that you get to know them and that they get to know you because, soon maybe, you will all have to form a solid team, ready to sucessfully face the transplantation.

THURSDAY AFTERNOONS

The team meets on thursday afternoons. One of the physicians will present your case, a decision will be taken. Sometimes it is simple, sometimes they have to discuss the case, because the objective of the meeting is to find the best solution for each patient : it is often transplantation, but it can happen that the patient can be helped in another way, for example with a shunt (blood flow diversion), or that a transplantation is not yet mandatory in the near future. Sometimes, transplantation is not feasible.
After the meeting, some of the team members will inform you of  it's outcome.

Now the ball is in your court !!  The team has taken a purely medical decision; they are offering a transplantation, they want to put you on a waiting list.
It could be that you immediately agree, because you had already come to the same conclusion, you had discussed it with your family, and so you felt ready to start waiting. But maybe you need some time to think it over, maybe you want to talk about it again with your family.  If you have the slightest doubt, do not hesitate to talk about it with the team, they will give you the time you need.
Without the slightest judgment, they will also accept your refusal if you do not wish to be transplanted. Your decision, whatever it might be, must be thoroughly thought over, and will be respected.

Shall I meet you on the waiting list ? If yes, then I will have to explain shortly how you can live through this difficult period.

THE WAITING PERIOD

The team's clinical coordinator will organise the waiting period. In most cases you will be allowed to go back home. Before doing so, a few measures will have to be taken :
- if you wish so, you will receive a beeper from Hepatotransplant, an association for liver transplantation patients, so as to be more free of your movements during the waiting period. As soon as a donor is available, the coordinator on call will contact you.
- you will be given the clinical coordinator's telephone number, and will be advised to call her regularly (once a month). Please do not forget to call her, because she must know how you are doing, and at the same time she will inform you of your position on the waiting list.
- you will also give her your contact telephone numbers, because if you do not call her, she will call you.
- she will decide with you when you must come back to hospital for controls, as it is essential to arrive for transplantation in the best possible health state. She will try to answer your questions, to give you advice, as much information as possible, including the schedule and timing of things to do.
- the clinical coordinator will also explain to you how the graft is taken from the donor, as well as your preparation procedure to the transplantation as soon as the graft is available.

A few examples :
Version 1 : it is 11 o'clock in the morning. The beeper rings and you can hardly believe it. Unbelievable ! At this time of day ? I would still advise you to call the hospital.
Version 2 : it is 2 o'clock in the morning. Your telephone rings and you are very surprised. Unbelievable ! At this time of night !
There is no good time to be called. Even if you thought you were very well prepared, it is often a difficult moment when the donor is announced.
You have a little time to get to the hospital (4 to 6 hours), you will be told exactly how much. When you arrive there, everybody will know already, they will direct you to the unit where you will be swiftly prepared for the operation.

THE SURGICAL PROCEDURE

On average, the surgery will take 8 to 12 hours. During this time, your family will be regularly informed, and will be at your side when you wake up.
When the transplantation takes place during a weekday, the clinical coordinator informs the family directly. Her office is situated on the 5th floor. You can always contact her by phone (02/764.53.09. or 02/764.53.14 or 02/764.53.06.).
During nights or week-ends, when the coordinator is absent, you can phone the Intensive Care Unit to obtain information about the surgery (02/764.27.33.).

....A sound disturbs you, a tube in your throat stops you from talking, you can't move your arms like you would like to.... Don't panic, you have arrived in the Intensive Care Unit, you are, if you allow me, "decorated like a Christmas tree".

THE INTENSIVE CARE UNIT

After a long operation and anesthesia, you don't have much of a choice : you will have to wake up slowly at the Intensive Care Unit. Still "in the fog", you will hear unknown sounds : alarms are used to get the nurses' attention, don't worry if they ring. You will see people (physicians, nurses) dressed in green working around your bed. Several machines will also surround you.
During the first hours, you will not be able to move, your hands will be tied. In most cases, you will not be able to speak during the first hours, because a tube placed in your throat will bind you to the breathing machine. It will be a good thing to stay as calm as possible and to listen carefully to the explanations that will be given to you; you will communicate by signs.
This tube will be taken out first, after a few hours, as soon as you will be awake enough to breathe on your own.
The abdominal drains will be removed as soon as the liquid inside your abdomen is in a small enough quantity not to have to be evacuated any more.
The vesical probe will be removed as soon as your kidneys work properly. The gastric probe will be taken out as soon as your bowels start moving again (at last ! - after about 3 days). The same day, you will receive water to drink. Before that, you will only receive ice cubes.
At the end of your stay, the nurse will only have to remove the electrodes and the arterial drip which was constantly monitoring your blood pressure.
When someone leaves the Intensive Care Unit, I always have the impression I'm hearing a sigh of relief.  Through this sigh, I hear the joy of obvious progress, the desire to rediscover the silence of a ward room, the pleasure to have one's family closer by and for longer periods, and relief because the time of agressive medical acts is finished.

ON THE WARD

You will not immediately be in great shape !!  You will have to struggle to get out of bed, your body will still remember too well the surgery. You will still receive several medications directly through your veinous drip.
Every day, you will wait for your morning blood sampling with a little anxiety; the nurse will regularly come in to monitor your blood pressure and temperature; she will measure the quantity of produced urine, and will want to know how much you drank.... The physicians will also be around, and, sometimes, you will have to undergo more tests.
During the first weeks, the physicians will monitor closely your state of health :
- they will watch over the graft's reactions, waiting for a rejection episode, and reacting without delay if the biopsy shows one by prescribing the necessary medications. They will keep you informed of the course of events.
- your doctor will also monitor your temperature to ensure that any infection is treated immediately.
- he will also monitor liquid intake and nutrition.
During this period, your active participation will be an essential condition to the graft's success. Strictly follow the orders that are given to you : personal hygiene, respiratory and physical exercises, correct intake of medicines, diet. Also, do not hesitate to point out if something seems wrong : a physical problem, a question that is worrying you, a "psychological" problem.

Oh, I see that you are on the right track : I meet you in the hallway, I see you less and less in bed. Congratulations ! You were operated only 6 days ago !
Have you already started to record the medications you are taking ? What ? The nurses haven't started your schooling yet ?

INFORMATION

As soon as your health permits, a nurse will give you a "workbook", a stock of medicines and a tensiometer. Then, before you go home, your schooling can start :
- you will learn to know the different medicines that are now necessary : their aim, their dosage, how to take them, side-effects, how to report your intake... There will be anti-rejection drugs : Prograf (Tacrolimus or FK506), Sandimmun or Neoral* (cyclosporin), Medrol* , Imuran*; and the medications that will protect you against infections : Zovirax* and Bactrim*.
- you will learn to monitor correctly your temperature, pulse, blood pressure, why it is necessary that you monitor them, and how to report your results.
- a series of advice will complete your information : diet, hygiene, sport and hobbies...
All the way through your stay in hospital, the clinical coordinator will visit you and check your progress. Towards the end of your stay, she will rate, with you and with the help of a questionnaire, your capacity to be in charge of yourself at home.

What do I see ? The suitcases are ready ! The great day has arrived ! Psychologically, you have prepared yourself to this...

DEPARTURE

As soon as possible, you will be allowed to go back home. It is always a very happy day, with sometimes also a little anxiety : will everything be all right ?
Before you leave, a last encounter : do you have enough medicines, prescriptions, a consultation date ?
Any more questions ?

And there you go ! You leave the hospital. From now on, if everything goes well, the transplantation team will see you at the consultation. In the beginning, twice a week, then once a week. It is essential that your health state still be monitored closely, with attention : blood will be drawn (to control the liver and kidney functions, as well as the blood level of  Prograf or Sandimmum/Néoral), you will undergo a medical visit by the physician.
Sometimes, a new stay in hospital will be necessary to solve a problem or another.
This medical visit will also give you the opportunity to ask questions, to talk about your worries..., please feel free to share them, the team will listen to you and will be able to help you.

We are coming to the end of my explanations. As I said at the beginning, I am only a little booklet who gives the first general information. I know that I have probably brought up a lot of questions !
Each member of the team, physician, clinical coordinator, nurse, social worker, psychologist, dietician, will give you more detailed information, considering your needs and timing.

I will end with some useful information..

ADULT LIVER TRANSPLANTATION TEAM

- Physician in charge : Professor Jan Lerut.
- Surgeons : Dr. Olga Ciccarelli
- Clinical coordinators : Mrs. Francine Roggen and Chantal Dereyck
- Psychologist and psychiatrist : Mrs.Geneviève Cool, Dr. Alain Luts
- Dietician : Mrs. Brigitte Bertrand
- Social worker : Ms.Stefania Marsella
- Hospital ward : U53 - head nurse : Mrs.Gaëtane de Thier.
                                   - administrative assistant nurse : Mrs. Françoise POSKIN.

Transplantation Surgeons :
Prof. de Ville de Goyet, Prof. Jan Lerut, Prof. R. Reding, Dr.O. Ciccarelli.

Anesthesiology service :
Prof. M.A. Carlier, Prof. M. De Kock,
Prof. L. Van Obbergh, Prof. F. Veyckemans,
Prof. Fr. Singelijn, Prof. Le Paulin de Warnoux, Prof. M. Van Boven,
Dr. S. Aunac, Dr. P Lavand’homme

Hepato-Gastro-Enterology service :
Prof. Y.Horsmans, Prof. A. Geubel, Dr. Peter Starkel

Neuro-Psychiatric service :
Prof. A. Luts.

Intensive Care service :
Prof. M. Reynaert, Prof. P.F. Laterre, Dr. X. Wittebolle
Head nurses : Mr. Joseph Tirone, Mr. D. Julien

Interventional Radiology : Dr.P.Goffette

Secretaries :
Tel : 02/764.14.01-14.12.
Fax : 02/764.90.39.

Hépatotransplant Bruxelles : association and help group for transplanted persons and their family :
    Mr. Daniel Brasseur : Tél : 081/44.04.14.
    Mrs.R.Stassen-Offergelt Tel: 087/68.63.71.
    Secretary : Mme Chantal Goffinet : Tél : 063/58.23.54.

DICTIONARY

- Aminopyrine test : a test to rate your liver function. Marked with a very small quantity of a radio-active substance, amynopyrine will be injected in one of your veins, and the liver will transform it into carbonic gas. The gas you then expire will be trapped by the solution in the bottle that was given to you at the beginning of the test, and later measured.

- Arteriography : a test to enable the visualisation of your organ's arteries and veins. At the beginning of the test, a constrasting substance is injected in your vessels. It is a very common test, sometimes uncomfortable during the initial injection.

- Ascitis : the accumulation of liquid in your peritoneal cavity.

- Liver Biopsy : the action of extracting a little piece of liver with a syringe, under local anesthesia.

- Catheter : general term used to describe all tubes that can be put in place inside the body.
                    They are classified in several categories, according to what they are used for :
               - those who give you food, drugs and/or liquids :
                          - venous catheters : put in place under general or local anesthesia in the neck or arm veins. They feed you                              while your bowel's activities stay insufficient.
                          - arterial catheters : inserted in a wrist artery, they monitor your blood pressure and facilitate blood                              sampling without having to use a needle.
              - those who drain secretions :
                - gastric tube : thin and flexible tube going through one nostril and down into the stomach. It drains gastric                     secretions as long as your intestine's activity stays low. It also prevents vomiting and, finally, some                     drugs can occasionally be administered through this tube.
               - vesical probe : thin tube inserted in your bladder during the liver transplant operation. It drains your                    bladder permanently and enables the medical team to follow precisely your urine flow and your kidney                    function.

- Percutaneous cholangiography : with a long needle, the radiologist reaches, through the skin, one of the extra-hepatic bile ducts.  He then injects a contrasting substance which makes the bile ducts visible on the X-ray. This test is routinely performed to monitor the bile ducts state, or to detect possible problems.

- Abdominal drains : flexible plastic tubes who drain the operated region and come out of your flanks. They are put in place at the end of the transplant operation. Their aim is to drain the intra-abdominal secretions during the first days after surgery.
All these catheters and tubes will be taken out as soon as possible. The procedure causes slight discomfort.

- Biliary drain : a thin orange or yellow tube introduced in your biliary duct during the transplant operation. It drains the bile in a collector bag.

- Echotomography : absolutely painless test using ultra-sounds. It makes the liver visible as well as your abdominal vessels, and thus enables the physician performing it to rate the quality of these organs.

- Electrocardiogram (ECG) : graph produced by the electrocardiograph machine. This is also pain-free, and gives a good idea of your heart's function. At the intensive care unit, electrodes will be glued on your skin so as to constantly monitor your cardiac rythm.

- Electromyography (EMG) : graph produced by taping of the electric waves generated by muscle contraction.

- Gastroscopy : direct exam of the gastric cavity by means of a tube introduced through the mouth.

- Graft : transplanted organ.

- Immunosuppression : diminution or abolition of an organism's immunologic reactions against an antigen; in the field of transplantation, drugs used to prevent or fight a rejection episode.

- Rejection : reaction initiated by the body to destruct an organ or an alien tissue after it has been identified by the immunologic surveillance system. The rejection episode can be diagnosed by the occurence of general symptoms common to all grafts (for example fever) and by loco-regional symptoms who depend on the transplanted organ. The rejection also implies a worsening of the grafted organ's function, objectivated by several tests (blood dosages, isotopic investigations, echotomography...).
The rejection risk is at it's peak during the first months after transplantation; after that it lowers but always remains. This is the reason why immunosuppressive drugs can never be stopped.  Rejection risks are controlled by adapting the immunosuppressive therapy.

- Scanner : painless radiologic technique enabling the study (by slices) of the human body's different tissues.

- Scintigraphy : technique aiming at finding in the body a radio-active isotope previously injected, to follow it's course and thereby a physiologic or pathologic process.

- Arterial pressure : measure of the pressure of the blood in your arteries. This pressure can be monitored by a tensiometer. The high value (maximum) is measured when your heart contracts (systole), and the low value (minimum) is taken when your heart relaxes in between contractions. The units are millimetres of mercure.

- Endotracheal tube : introduced through the mouth (for adults) down into the trachea (tube leading to the lungs). This tube gives you the best possible ventilation (breathing).

USEFUL INFORMATION :

Francine Roggen
Clinical transplant coordinator
Tel: 02.764.53.09.
Fax: 02.764.90.39.
Email : roggen@chir.ucl.ac.be
Please contact me on weekdays between 11:00 and 14:00.
In case of absence, try to contact Chantal Dereyck or Prof. Jan Lerut.

Chantal Dereyck
Clinical transplant coordinator
Tel: 02.764.53.14.
Fax: 02.764.90.39.
Email : chantal.dereyck@clin.ucl.ac.be
Please contact me on weekdays between 14:00 and 17:00.
In case of absence, try to contact Francine Roggen or Prof. Jan Lerut.

Jan Lerut
Surgeon
Tel : 02.764.53.06.
Fax : 02.764.90.39.
Email : lerut@chir.ucl.ac.be
Please contact me on weekdays between 15:30 and 17:00.
In case of absence, try to contact one of the clinical coordinators.

Adress : Cliniques Universitaires St-Luc
Espace EUROLIVER - 5th floor (room 054720)
Starzl Room - Bureau des Médecins,
Cliniques Universitaires Saint-Luc,
Av. Hippocrate 10
1200 Bruxelles