Life on the waiting list
Patients have been asked to give their testimony on certain questions that are important after transplantation. Happy reading !
I'm a young woman, age 27 years, who have had a liver transplantation on 11th December 1992.
Some years ago, in 1989, I lost my mother as a result of a livertransplant. I must say she was really very ill. So you see, the mother died and the daughter survived. Nobody should be afraid of a grafting. When the surgeons operated on my mother it took them 15 hours. That day the weather was fine. Three years later in 1992, when the doctors operated on me they used a new method for the second time and the grafting took them no more than four and a half hours.
The fact that the surgery doesn't last very long anymore increases the chance of survival.
What I recall of my mother's illness is very vague ... she has died, I was hardly 17. I have a vague recollection of artificial feeding and the length of the development of the disease.
I remember the time in the hospital rather well. She has had her operation in St. Luc's hospital in Montreal. What a great team ... The staff were very gentle, understanding, always smiling. And nowadays nothing has changed.
I think my mother had to wait for another liver for a little less than a year. I recall she asked me if she would have a liver transplanted after all. I believe she was afraid ... which is very normal. I answered, "You must seize every chance to stay with us some more time. If you don't take the chance they offer you, you are dead that's certain but when you decide to have a transplant the chances to survive are fifty©fifty. You must go one. I'll back you."
I still remember this discussion. She was happy she'd got my blessing. But things turned out differently from what we'd expected.
As far as I'm concerned, I was never able to accept my mother's death and in 1992 I had enough of it. I drank a bottle of tylenol and took some tablets with a bottle of wine : a real Molotov cocktail for the liver. When I realized what I'd been doing it was already too late. I lapsed into a coma, got pressure in my brains and my liver was completely ruined.
They took me in the air ambulance from CHUL hospital in Quebec to St. Luc's in Montreal. I was to have a liver transplant within 48 hours. Would they find a liver ?
In the meantime surgeons trepanned my skull to keep the pressure in my brains. One damaged cell would be enough not to be operated on. My father respected my views : I didn't want to vegetate. We had talked about it many times before. Eventually they found a liver. My survival probability was one chance in ten and my family mentally prepared themselves for my death. The end of the story is that in 1995 I gave birth to a son after 7 months of pregnancy.
The lesson I've learned is obvious : never give up, put your trust in life and rely on the doctors of course.
I'd like to thank the whole liverteam at St. Luc's hospital and the two doctors, Dr. Pierre©Michel Huet and Dr. Dennis Marleau, who followed up our state of health.
I certainly mustn't forget nurse Danielle Rock, always smiling, she was engaged with us during our yearly visit to the doctor.I trust that my story, tragic as it is, may comfort, support and strengthen you. There is a discussion group for people that have had a transplant or are about to have one to meet and become acquainted. Address : www.globetrotter.net/gt/coin/groupes/groupes.asp Section : Sciences et Santé Group : Les Greffés
| Herman Tob testimony (in memoriam 1936-2011)
My name is Herman Tob.
I was born on 2 May 1936 at 6 a.m. in Etterbeek in the Baron Lambert clinic in Brussels. I was born a Jew. As a very young child during the war, I was hidden and saved thanks to the generosity of résistants in Brussels. I had quite a solitary life as I went through the essential stages of growing up: education, difficulties, experience, etc., all of which no doubt led one day to my personal fulfilment. In the different situations I have encountered in my life, I have always had the greatest respect and tremendous - unconscious but very deep - natural sense of appreciation for the breath of life in us and for creation.
God has always been present in my subconscious, in my education, in my training... I don't know!!!???... Now that I have no doubt miraculously come back to life, I consciously believe in God and in his profound synthesis with his creation: MAN. I want to believe in the greatness of man and his tremendous power to create the best, not forgetting his weaknesses and ...!
All this by way of a preamble to give you some idea of my background when in 1976 my doctor, Professor I. Haber, head of the gastroenterology service at Middelheim hospital in Antwerp, told me that I was suffering from chronic and evolutive liver cirrhosis caused by a form of hepatitis that at the time was known as non-A-non-B hepatitis, but since 1989 has been referred to as hepatitis C.
After I got married in 1964, I left Brussels for Antwerp. I worked hard and with very real determination to secure my financial freedom and independence with varying degrees of success within a stable family environment. From 1976 on, my everyday life became much more burdensome.
I was always tired, almost to the point of obsession. I could make strenuous efforts, but it was difficult to recover. Professor Haber's diagnosis and recommendations to keep me alive would no doubt have destroyed me had I not found the inner strength to endure. I had to give up what little sport I did, gardening was out, and I wasn't even allowed to open the garage door, etc. The years went by, while I had to make a great effort to be patient and brave because I felt my physical condition was deteriorating. As for work, I did what I could.
In 1981, I suffered a haemorrhage of the oesophagus. I came through it all right but after that I felt my condition was getting worse in gradual stages, and I took to my bed and then went to hospital, with tests that gave me hope and despair. My liver was slowly dying. Eventually, the idea of a transplant came up.
To make sure before taking any decision, I went to Paris to see Professor Benamou. He sent me back to Belgium and insisted I should go to the specialised services in ST LUC UCL in Brussels.
TRAVELLING AFTER A LIVER TRANSPLANT
If the travel bug gets you after your transplant, don't hesitate to talk about it with your specialist.
As you will see from Gérard's letter, just a few months after your operation you may find that the pleasure of travelling and visiting exotic lands is not just a dream.
But of course, you can't just leave without any preparation! What will you need?
Documents, documents and more documents.
- Along with your identity papers, keep a little card on which you should write clearly that you have had a liver transplant and the year of the operation.
- A medical report with your basic medical data.
- Addresses and telephone numbers: of the hospital where you are being treated
of your general practitioner
of a family member
of a transplant centre in the country of destination (if possible).
Even if you aren't going very far, for example to France, always check that you have sufficient cover, e.g. for repatriation.
Contact your mutuality in good time and ask them for the documents you need for the country of your destination. For the countries of the European Community, you will need an E111 form. It's always best to have an English translation of the different documents with you.
When you go on holiday, take a sufficient quantity of your usual prescribed medication. You should keep some handy if you're separated from your luggage (e.g. when travelling by plane) as you never know what can happen.
Get advice from your surgeon on what sort of medication you should take with you on your trip, as this will vary according to the country of destination.
You will certainly need to take medication for gastroenteritis, pain, temperature and insect bites.
A list of the generic names and pharmaceutical names of your medicine may be useful.
Sandimmun: pharmaceutical name Cyclosporine: generic name.
Always take first aid equipment to treat wounds: disinfectant (e.g. Bethadine) and compresses.
A thermometer can be useful, but it should stay at home if you have no problems with high blood pressure!
Contact the consulate if you visit a far-off country. There you will get information on the necessary vaccinations. Remember that only attenuated vaccines are permitted!!!
Hygiene: It's better to be safe than sorry!
You should be particularly cautious in hot and/or far-off countries.
Food: steer clear of raw vegetables, meat and fish. Only eat fruit that you can peel. Never drink tap water. Brush your teeth with bottled water or tap water disinfected with chlorine tablets. Only drink from bottles that have been opened in front of you at the table.
Toilets are a major source of infection. Be careful: use disinfectant (bleach does the job).
Last year you heard about the problem of the sun (article available). When you go on holiday, be prepared.
You can always contact a patient who is a "holiday specialist" through Hépatotransplant.
Letter from a transplant patient who likes to travel
Like many of my friends who have had a transplant, you expressed some surprise at my travels to far-off countries where hygiene and medical assistance can be lacking.
Your surprise is only to be expected as we transplant patients are all too used to being told that we are "fragile".
I have always had the travel bug, and when I came back home after my transplant, I found it extremely difficult to get back to normal life and I was afraid of having postoperative complications, infections, rejection, etc. I thought I had seen the last of my days of travelling to far-off countries to discover other races, other people, etc. However, the fear of complications wanes over time, and my desire to travel came back.
I tentatively organised a few little trips (Germany, Italy, Switzerland) with the help of my doctor and with the necessary precautions (medication, insurance, etc.). Everything went really well, so I wanted to go places I had planned to see but had given up the idea (Turkey from east to west, China, Syria, Jordan, etc.).
Of course, travelling calls for rigorous preparation (your usual medication plus all the products that may come in handy if you come down with a bug - my doctor has made a list of them). As is the case for any person travelling to certain countries, the main thing is to have self-discipline when you're tempted by lavish dishes. Steer clear of appetising salad (what kind of water was it washed in?), don't accept a bottle of water that isn't opened in front of you, etc.
For any lover of travelling, these minor inconveniences and restrictions are quickly offset by the discovery of distant lands: the myriad wonders of the "Middle Kingdom", the wild countryside of Eastern Turkey, the discovery of Palmyra, the sand city and the unforgettable and unrivalled Petra and Wadi Rum where the temperature is around 50°C. I went on all these trips without any health incident whereas most of my travelling companions (who are not transplant patients and are in good health) had the "classic" complications associated with these parts of the world, including the "tourista".
Finally, all this travelling made me realise that I should no longer have a fixation about my situation as a transplant patient and that I should consider my transplant as an incident, a stage in my life. I no longer feel that I'm any different from anybody else.
Physical condition and « sport » before and after transplantation.
Your physical condition before the transplant is very important. It will depend on your medical condition, your diet and your possibilities for keeping your muscles in trim.
Very often, your muscles are not in the condition they should be. Dietary restrictions and lack of exercise result in muscular atrophy. In addition, the fact that you feel so tired sometimes discourages you from moving, and this lack of exercise accelerates the process of loss of muscular power. Over time, a lack of movement leads to stiff joints, osteoporosis and muscular pain, which are secondary effects that should be avoided.
How can you avoid muscle loss?
Try to do a little exercise every day. Walking is the best remedy as it is the cheapest and the easiest for everyone to do. Walk your dog, go out and get a newspaper or get a breath of fresh air in the woods. Walking at least 2 x 20 minutes a day while breathing deeply will keep you in the best possible condition while you are waiting for your transplant.
When the time comes for your pre-transplant consultation at the UCL, the physiotherapist will give you a muscular and respiratory checkup. At the same time, he will give you advice on how to keep in shape.
How can you get back in shape?
As quickly as possible after the operation, the physiotherapist will help you to get up and take your first tentative steps. The first steps will be the hardest, but they are also the most important for complete recovery. You will do a little more exercise every day. Once you get back home, you will have to continue your physiotherapy.
The post-transplant rehabilitation programme.
Everyone has his or her own level of "sporting" satisfaction. Some people will be satisfied with regaining their independence in their everyday activities (shopping, cleaning, meals, work, etc.). Others will want to do sports. There is nothing to say they can't. To restore normal muscle power, it is highly recommended that you do a sport of your choice. Walking is a good idea for everyone as soon as they get back home. Your physiotherapist will define your programme according to your physical condition when you leave hospital. Add 5 minutes every day.
You can start swimming once you get medical authorisation (not until 3 months after the operation). When you swim, the weight of your body is supported, and all your muscles work without any risk of injury. Swimming is beneficial because it gives you a general feeling of well-being and relaxation. A little aquatic gymnastics will be beneficial for your joints and muscles.
Advantages of physical exercise.
Your appetite will increase, your digestion will be better, and your metabolism will improve. In addition, physical exercise leads to the secretion of endorphine which gives the sensation of well-being. You will feel much better if you have regular physical exercise.
St Luc University Clinics
You may find this difficult to believe, but I discovered sports thanks to my liver transplant. I had never done any sport before, but at a get-together of the patients' association, a friend of mine (who has also had a transplant) persuaded me to give it a try and to enrol in the sports association for transplant patients.
This was a real pleasure for me during my convalescence. A year after my transplant (I was then 51 years old), I started my training. Four years on, at 55 I feel on top of the world and young. Sport has given me a new lease on life! It is thanks to sport that I have become a new man after that major surgery. It has been beneficial to my mind and body, but it has also been beneficial in terms of the friendship I have had with my fellow sports lovers at the association training sessions. As far as I'm concerned, there can be no doubt that sport or physical exercise after a transplant is tremendously beneficial as it helps you progress after the operation towards a really healthy life.
One thing Raymond omitted to say is that he along with a whole team of Belgians travelled to Australia to take part in the World Transplant Games.
If you are interested, please don't hesitate to contact the ASBT (Association Belge de Sport après Transplantation). If you're not the sporty type, or if you're a bit reticent or you think that it's sport for handicapped people, why not attend one of the forthcoming training days? You'll get help to start you off, with professional monitors and a really good atmosphere. If you want more information, you can contact:
Philippe Cordier 02/7641111, (ask for extension 886042)
Raymond Coppens 02/4269218
Michel Baele 02/2104666
| Professional life after a transplant
One of the aims of transplantation is to ensure the reintegration of the patient in society after the transplant, i.e. the return to part-time or full-time work, sometimes with the necessary reorientation. Experience shows that some patients prefer not to return to work and pursue alternative interests (volunteer work, vacations, hobbies). Others return to work after some time (3, 6 or 12 months). Some resume their former life with exceptional enthusiasm: some young people go on to successful university careers, others start a new career, etc.
Testimony of Michel, a professional soldier
"My testimony is not for myself. My career is traced out before me. My aim is rather to encourage young people who have undergone transplantation to fight and to demand from society the same status as people who have not undergone this form of surgery."
Michel is 33 years old. He is married and he has two children. He underwent a transplant in 1991 following a long liver disease and a difficult waiting period with many painful bouts of bleeding oesophageal varices. After the operation, he had lots of complications for 56 days, but he never lost sight of his objective: to get out of hospital and to struggle to get back to his life as a professional soldier in a combat unit and as a volunteer in the fire service. It must be pointed out that until his illness reached an advanced stage, Michel was in top physical shape.
Like any other transplant patient, once he got home, even climbing the first stair was a real challenge.
He quickly set himself specific aims: to walk as soon as possible, and to walk a bit further every day.
When he thinks back, he expresses heartfelt gratitude to the medical team and his family and friends who helped him through this difficult time.
And he adds: "It's not as easy as you think!"
Six months after the operation, he resumed part-time work (in spite of the recommendation of the military doctor who wanted to give him 36 months sick leave. One year after his transplant, he was fully reintegrated in his combat unit, and he had to drive trucks and earthmoving equipment.
To take on this challenge, he underwent the same training as his fellow soldiers: field exercises, forced marches (30 km a day) with a heavy rucksack and nights sleeping in the open.
Once he achieved this objective, he then felt he wanted to return to the fire service in Huy, where the doctor said simply "no" after asking one day the question "What's a liver transplant?". Thanks to the medical certificates I got from Professor Lerut, I was able to appeal and I've now won my case. I'm once again a volunteer in the fire service back fighting fires with my colleagues. It's a pity when you come up against misunderstanding so often. People said I was "mad" when I said I wanted to be with the blue helmets in Yugoslavia at the start of 1993. I had to fight, and it was once again thanks to the support of Professor Lerut that I was able to go off with my unit in March 1994 after 6 months of intensive training. What a victory it was for me! In Yugoslavia, I covered 12,000 km, dug trenches and built anti-aircraft shelters. I have no reason to be ashamed of my performance compared with anybody else in my team! I'm just about average.
My transplant was a real success.
I might add that my motto has always been: good morale, courage and lots of good will.
Interview by Ruth Stassen, February 1995.
| Pregnant after a transplant
It was a fine summer morning when Pat first asked me if, having had a liver transplant, she could have a child.
Now, eighteen months later, she is the proud mother of little Cyril.
This article will relate her story. The first part is a brief outline of her experience of various transplantation centres.
Ideally, the first step towards motherhood after a transplant is a consultation. Take the time to talk about your desire to have a baby, then ask questions and explain your fears. The doctor will give you the necessary information.
- How long after the transplant?
You have to give your body time to recover from the transplant. It would be best to wait a year. Your blood test results are stable. Your medication, especially the immunosuppressant drugs, will be significantly reduced in dosage.
- What are the risks for the mother?
Certain complications in pregnancy are more frequently reported: anaemia, water retention, high blood pressure, pre-eclampsia, premature birth, caesarean section or other obstetric complications.
At a hepatic level, there may be a temporary increase in enzymes in spite of the fact that the treatment has not changed. There is no possibility of rejection if the doses are followed carefully and are correctly adjusted.
It must be remembered that the initial disease can reappear. There is little information on this in the literature. Finally, it must be said that there is an increased risk of infection, especially viral infection.
- What are the risks for the baby?
As with any pregnancy, genetic screening must be carried out. Congenital malformations are not reported in higher than average numbers among women who have undergone transplants. No centres report any malformations due to immunosuppressant therapy even though cyclosporine and FK506 cross the placenta barrier. Treatment with azathioprine must be discontinued.
After the birth, small doses of cyclosporine (or FK) are detected in the baby's blood, but these disappear after a few days.
Very temporary renal impairment is regularly reported.
The incidence of fetal mortality is around the average for the population. However, babies are very often premature (68%). The experience of the different centres can be summed up as follows: babies in good health, light and premature by a few weeks. Some babies need to spend a more or less extended period in the neonatal service. Later on they develop quite normally.
- What are the contraindications?
The literature gives very little information on the contraindications of pregnancy after transplantation. Healthy carriers of the hepatitis B and C viruses are closely monitored so that any reactivation of the disease during the pregnancy is detected as quickly as possible.
According to our experience, so far there have been no problems with carriers of hepatitis B. The baby must be vaccinated immediately after birth. As for hepatitis C, there is a higher risk of transmission of the virus. The risks for the mother and baby must be discussed with specialists.
If the mother is diabetic, pregnancy is not advisable.
- What does the literature say about fathers-to-be who have undergone a transplant?
There's nothing particular in the literature on this subject. All around the world, many fathers who have undergone transplantation have had healthy babies. Our experience only confirms this.
- What about young women who received a transplant in their childhood?
Up till now, there has been little available information as we have not documented this question for long enough.
Furthermore, the long-term effect of immunosuppressant treatment on the reproduction system is a subject that is arousing interest in centres where children undergo transplantation.
When we consider the development of children after transplantation, we may get the idea that it will be impossible for them to have children. In any case, this is what doctors say.
In our centre, Stéphanie, who underwent transplantation at the age of 14, had a beautiful little girl seven years after her transplant.
We will keep you posted.
- Can I breastfeed the baby?
Breastfeeding is generally not recommended in the literature. FK506 is detected in the milk. As regards cyclosporine, the situation is less clear-cut. In fact, it seems that it disappears from the colostrum (first lacteal secretion) after 24 hours.
After reflecting for some time on the different aspects of pregnancy, you are now ready to take the second step towards motherhood. You will need to undergo a few examinations to check that you are in good health: blood tests, doppler ultrasound examination, a clinical examination and a chest x-ray. If all these results are satisfactory, you should contact the gynaecologist who will be supervising you throughout your pregnancy in close cooperation with the transplantation specialist.
The gynaecologist will give you more information on the medical monitoring (genetic screening, regular blood tests, supervision of your blood pressure, weight, nutritional advice, ultrasound examinations, etc.).
Once you have done all these things, you can think about actually conceiving the baby and enjoying your pregnancy without being overanxious. But I'll let Pat tell you her story...
Three years after my liver transplant, I told Dr. Lerut during a consultation that I wanted to have a child. I asked whether it involved too many risks. He gave me quite a lot of information and offered a checkup. On 20 January I got the answer to my question. He told me I could, and by April I was pregnant. Every fortnight, I had a blood test and I visited my gynaecologist, who lives nearby. I went to Brussels once a month for a consultation about the transplant. From the sixth month of pregnancy on, I had a blood test every week and I was monitored more frequently. I had water retention and my blood pressure was quite high. I was very tired and I was resting a lot.
Cyril was born after 36 weeks by caesarean section on 28 November at 10 a.m. He was a tiny baby and weighed barely 2 kg 180, but he was healthy!
After the birth, I had some difficult times. I was suffering from anaemia and I had a blood transfusion. I was exhausted, but as soon as I saw my baby my spirits were revived.
Pat, what were you afraid of before and after the pregnancy?
I was mostly afraid of the hepatitis, not for myself but in case I transmitted the virus to my baby. I was also afraid of malformations because of the medication. However, I was reassured by my gynaecologist. For example, he did 4 ultrasound examinations instead of 2. Also, I didn't hesitate to call him when I felt anything untoward or even when I felt ill at ease.
What problems did you have during the pregnancy?
Mostly tiredness from the fifth month on. I was very careful and I followed the advice to the letter (I had been told about the possibility of premature birth). I had a lot of rest and I didn't carry any heavy weights. In addition, I got a home help who came to help me with the housework. You can get this service with a medical certificate, and I must say it helped me a lot.
How did your family react?
Well, they first thought it was an accident, and I felt misunderstood, and that made me sad. Already when I had the transplant, they regarded me as being somewhat different from other people. As far as I was concerned, having this baby was like being able to go on stage, to show that I was like everybody else. During the pregnancy, I talked about this to my mum and also to my sister, but that was nearer the time of the birth. Your family should encourage you and understand that being pregnant is living, living a second life. My baby is my success.
Is it possible that your family was afraid what might happen to you?
No doubt they were, but it's something you have to talk about. The family has to become involved and to be there, for example, when the doctor gives information. Most important of all, the family should be well informed before they express any unfounded fears or doubts. After all, medicine has made a lot of progress.
Your baby was born by caesarean section. Were you told about this?
My gynaecologist spoke to me about it in the sixth month of my pregnancy. As far as I was concerned, it was just an ordinary operation. Besides, I wasn't afraid, and I was so relaxed that the anaesthetist commended me. After that, of course, came the pain with the contractions.
You didn't breastfeed your baby. Was that a problem?
No. I knew that cyclosporine passes through the milk, but I didn't see that as a problem. There's perhaps less intimacy with a bottle, but you can be happy in other ways, and I look at my baby, I see him when he smiles and I never have to hide somewhere to feed him.
It's been two months since the birth. How are you now?
I'm getting my strength back, and being three instead of two takes a lot of getting used to. I'm still tired so I sleep or rest when Cyril is asleep. For my housework, I'm entitled to have a home help for six months.
Pat, to sum up, what message would you like to give mothers-to-be?
What happened to me is really beautiful. You have to take risks. Anyway, every pregnancy, whether you have had a transplant or not, involves a certain amount of risk. I think it's very important to follow all the advice and to make good preparation.
And if sometimes I don't feel on top of the world, I just look at my baby and he makes me feel much better. That's what my life is about!
I have the pleasure of seeing this happy mother with her baby in her arms, and we, the transplantation team, are pleased to have been able to participate in a small way in this happiness.
After Pat, two other young patients of ours had a baby. They had no trouble during their pregnancy, and the children were born at full term, quite naturally and in good health.
These births demonstrate something: after a transplant, the patient can continue to have a normal life.
I'd like to quote the words of a young mother shortly after the birth of her daughter, "It's marvellous. Thanks to my donor who gave me life, I in turn have been able to give life to my daughter, so things have come full circle."
Testimonies and information from the Transplantation Center of the St-Luc University Clinics.
Clinical transplantation coordinator
| Life insurance: a crusade
Allow me to introduce myself. My name is Helen. As my first name sometimes causes confusion, I can tell you that I'm a young 28 year old woman. I work as a secretary in the purchasing department of a large company. It's very interesting work. It's very tiring and sometimes stressing, but I enjoy it!
It would take too long to tell you my life story, so I'll be brief.
I underwent a kidney transplant on 08/05/85 (after 8 months of dialysis). My dad donated one of his kidneys. It's the most beautiful gift I ever received. On 04/08/93 (after 4 months of dialysis), I underwent a combined liver-kidney transplant (another beautiful gift).
Since then, everything has been wonderful: complete freedom, no more special diets, one consultation a month and a series of drugs. I don't think that's all that bad as long as I'm enjoying good health.
Six months ago I bought a small apartment. I had always imagined that I could never do that as I thought that only healthy people did that sort of thing. After all, when you have a transplant, you're healthy, but try telling that to the bank.
My insurance broker is an exceptional person, and I very quickly got a loan. As for the insurance, it was much more difficult. It took 5 months, scores of telephone calls, umpteen letters and the support of the transplantation centre. During this time, at one point I even felt like giving up because I was afraid of getting a negative reply and further disappointment. My parents were with me every step of the way and gave me lots of support.
Eventually, the positive results were a great personal victory for me, and I wish to thank all the people who supported me during this long crusade.
A number of young patients have trouble getting a loan or an insurance policy and even proper travel insurance.
A few more examples may be helpful.
Luc had a transplant at the age of 17 and was at that time completely covered by his parents for his mutality and insurance. Eight years later, he was a chemist and wanted to set up his own business. Needless to say, he couldn't be dependent on his parents forever and he followed the necessary administrative steps. To his great surprise, his parents' insurance company refused to grant him insurance. After a telephone call by his incensed father, they eventually agreed, but with a 7-year introductory period!
It should of course be remembered that Luc had his transplant 8 years ago and has no health problems.
What a nice surprise!
Lotte underwent an emergency transplant 4 years ago, and one year later her condition is perfectly stable and she is living a normal life. Two years after the transplant, she has a little girl and everything goes normally. However, when they go to buy a house, after a few contacts they realise that she can only get a very small loan and certainly no life insurance. What a disappointment! Lotte comments bitterly: "First society makes it possible for you to get your health back, but then it reduces you to a high-risk invalid". It hurts not to be considered as a normal young woman.
This is a growing problem because the children who have undergone transplantation are growing up and they have a right to expect a solution !
| Hepatitis C
Paula Semer, senator , Belgium
The discovery that I had cancer was a serious crisis in my life. Learning to live with the physical and psychological consequences of a mastectomy with radiotherapy caused me much suffering for many years. When I woke up after the narcosis on 2 February 1981 and felt that something was missing from my right side, I understood. A voice inside me kept telling me: "I have breast cancer. I don't have long to live", but deep down I realised that I still wanted to do something with my life. I first thought of writing a book, but when I started working again as a television producer I made a series of programmes with a guide. My life took different directions, and each moment of my existence took on more meaning.
Now, 16 years later, I am facing chronic hepatitis C and an incipient liver cirrhosis. Questions and thoughts from the past are resurfacing: "Why me and not someone else?" "Life hasn't given me a chance!"
But I also think: "What does all this mean?" and "Why, when and how did I get this virus?"
For several years, I have been going to see my oncologist for a checkup for breast cancer, and the results of the liver tests were never very good (albeit without a diagnosis), but after a liver ultrasound examination I was reassured for a year. When I retired, to my great surprise my general practitioner said: "It's a pity you can't have a glass of wine now that you can finally enjoy life". I have never been able to convince doctors that I like to have a glass of wine with a meal, and no more. They always suspected I drank too much. Two years ago, when the results of the blood tests were getting really bad, the specialist said: "Don't take any more vitamins, stop drinking and have your blood tested every six months". There was never any improvement in the results.
It was a mystery!
I moved house and found a general practitioner near my home. This young man eventually said to me: "You can't go on like this! For the blood test I'll also put down hepatitis".
One thing led to another, and they detected antibodies in my blood, and after a further laboratory test, "it was still lurking in my body", as he put it. After a liver biopsy, all the truth came out and it was not by any means easy to accept.
My young doctor had the humility to admit to me that all this was new to him and that to tell the truth he didn't know much about the subject. However, he did get some documentation for me. When I read it, I was completely taken aback, but it was only when I watched a programme with specialists from the "Liver Centre" in Villejuif on the France 3 TV channel that I realised the extent of the problem.
I was amazed at what I heard. Hepatitis is an inflammation of the liver. There are several viruses that caused hepatitis. In 1989, researchers discovered the C virus that is causing increasing concern. Until 1990, this virus could quite easily spread unchecked through the use of blood and blood products, that is, through blood transfusions and the intravenous use of drugs and non-disposable medical and paramedical equipment. If it goes untreated, hepatitis C can become chronic and develop into cirrhosis of the liver then liver cancer. It is difficult to say where the process might end. Compared with the scientific explanations, the testimonies of patients treated with interferon appeared to me to be very forceful???.
So much human suffering.
I started out on a solitary quest with few clues to help me. I soon discovered that most doctors did not realise the extent of this enormous problem and that those who were aware of the problem had some rather unpleasant tales to tell.
Here are a few. A female general practitioner treats several middle-aged women who had children during the 1950s and 1960s. In many hospitals, it was common practice in those days to give women a blood transfusion instead of advising them to rest and take an iron supplement.
A surgeon fits a prosthesis to a man who has problems with his hip, and a year later, when he decides to replace the second hip, he discovers this patient has hepatitis C. Of course, in spite of all the precautions that are taken, the C virus still finds its way into the donor's blood. In a hospital, an endoscopy is carried out on a patient who suffers from hepatitis C, and the two next patients are infected! All the people who told me these things are not trying to denigrate the medical world, but they are genuinely concerned and they want to be more prudent to foster more "antiseptic" thinking in all situations. Since these things happen in hospitals, what, we may ask, happens when you go to the dentist or to the chiropodist, when the jeweller pierces your earlobe or when you get a tattoo, and what about intravenous drug users or convicts who share razor blades, etc.
The general public knows nothing about this growing problem. Up till now, I have met with little understanding. People don't listen or they find my approach too emotional or pessimistic. I am often on the receiving end of comments like: "You should learn to live with your limitations" or "Everybody has problems when they get older" or "We don't know what is going on in our bodies either". Some people started acting rather strangely and distanced themselves from me.
During the first few days after the diagnosis, I was frantically searching for answers to certain questions: Where was I infected? I read once again some old documents I came across and discovered that I had received a blood transfusion at the time of my mastectomy. Can a virus lie dormant for many years? I had been on several long trips, and I had followed the Chinese side of the silk road in conditions that were not always very hygienic.
During a vacation in Sri Lanka, I trod with my bare feet on a thorn, at least I thought it was a thorn, but on my return I discovered that it was a piece of a needle that the doctor was able to extract from the sole of my foot with great difficulty. I threw out a chiropodist who cut me several times in the foot, I had been to the dentist regularly (like all middle-aged women), I had received many injections during examinations or during acupuncture, I had my ears pierced after receiving a nice pair of earrings and... Oh! I decided to give up this frantic search. I will never know the truth.
It's not just that the general public is indifferent, but the political establishment is not showing much interest either. At the first meeting of an interparliamentary study group on "viral infections" set up six months ago, very few MPs turned up. And to think that a number of eminent experts had come to explain a very serious situation. However, problems have never been solved by keeping quiet about them. There is an obvious need for awareness-building campaigns to emphasise the dangers of infection and how to avoid contamination along the lines of the HIV campaign.
Honour must be given where honour is due. In the media, the journalist Jan de Zutter of "De Morgen" newspaper, was the first to draw attention to hepatitis C.
He spoke of a hidden epidemic. When I read his article, the image that came into my mind was rather that of a giant monster that was slowly rousing from sleep. Thousands of Belgians would be infected as twenty new cases came to light every day. The Internet keeps us informed about the American situation. In the USA, seven and a half million adults and children are infected. Patients are forming self-help groups for difficult treatments and exchanging experiences.
As for me, what can I do as a patient? The treatment I am being offered has not yet been fully developed and is as yet at an experimental stage. For the moment, it seems to me that it's worse than the disease itself. I have agreed with my specialist to have a checkup every three months. If the results of the blood tests deteriorate, I may have no choice but to start interferon/ribavirine treatment.
Apart from occasional bloodshot eyes, there are few annoying symptoms. Nonetheless, my body and my mind have been sending out signals that I have refused to recognise as such: tiredness, paleness, sometimes a yellowish complexion, dark urine and depressive thoughts.
I know I'm a high-risk case and my outcome is doubtful. I'm 72 years old and I hope that the disease will evolve slowly. In addition, I'm very careful with my general health and I get guidance from two friends who are doctors and who practice holistic medicine. I take medication, a drug called biopharmaca of which foreign publications explain the effects on serious liver disorders. I'm careful with my liver and I lead a temperate life. I have just completed a fasting and disintoxication treatment, and I'm now trying to work with visualisation exercises that I used after my treatment for breast cancer.
But while I still have the strength to do it, I want to increase the social and political awareness of the authorities and politicians with regard to this problem. I hope that this interparliamentary study group will continue to work, while I'm at a loss to express my gratitude towards the specialists who give us so much support.
It's also important to mention the screening, whether it is possible or not, the search for a vaccine and drugs, the pharmaceutical industry, serious phytotherapy, the need to alert general practitioners and to inform the general public, self-help and contact between fellow sufferers and the accompaniment of people whose health is deteriorating.
As at each crisis in my life, I am involved in other activities.
Just as I battled against the claim that cancer was contagious and the patient had to be isolated, I will fight against the stigmatising of patients suffering from hepatitis C. I won't hesitate to tell some home truths to my eye specialist when she feels she has her back to the wall: "You'll have to see your general practitioner. I can't help you." After all, she could have at least prescribed drops to prevent drying of the cornea.
Dear reader, if you have reached the end of this testimony, don't bury your head in the sand like an ostrich. To get things done, warnings should ring out louder when there are not many people to sound the warning. No one is completely safe. Today it's me, but tomorrow it could be you who is affected or a loved one.