Patients that have been diagnosed with liver disease and have possibly been assessed for a transplant usually have many questions about the transplant process, below are listed some of the more common questions that are usually asked. If there is a question that is not answered below and you would like help, please get in touch with us.
PLEASE NOTE ! We are not able to answer personal questions about medication, medical procedures etc. these MUST be referred back to your coordinators/consultants. The Q. A .section below, are questions that are regularly asked by patients and their families to the support group, they are not expressed or endorsed by the support group, merely for your guidance only. (E&OE Omitted).
Q . What is a liver transplant?
A . A liver transplant is a surgical procedure to remove a diseased liver and replace it with a healthy liver from a donor. Most liver transplant operations use livers from deceased donors. Except for live donation.
Q . What is a transplant list?
A . A transplant list is what you are placed on when you have been assessed and are a suitable candidate for a liver transplant. Once you are on the list you can be called in for the operation at anytime. How long you have to wait depends on several factors, they being, a suitable donor being found, your medical condition, blood type etc. Sometimes you may be suspended from the list if your condition deteriorates, until you are strong enough again to withstand the operation. Then you are place back on the list again.
Q . What is rejection?
A . Rejection is a fairly common condition that can happen within a few days after the transplant, medication (anti rejection) drugs have to be finely balanced to stop rejection. Usually this can be controlled by steroids until things settle down. Rejection can occur at anytime even years after the transplant so regular clinic visits are essential and must not be missed. Blood tests are taken at clinic visits to check for signs of rejection.
Q. Will I need to take medication after a transplant?.
A. You will be taking a large number of medications (tablets) immediately after your liver transplant, this will reduce in time. Drugs called immunosuppressants (anti rejection) will lower your immune system and stop it from attacking your new liver. These drugs will help stop your new liver rejecting and you will be on for the rest of your life.
Q. Can I go on holiday abroad after a transplant?
A Yes you can holiday abroad, but it is always advisable to contact the liver unit/coordinators to confirm that you are ok to travel and to advise on unsafe destinations that are unable to give medical assistance to transplanted patients, some companies may request written confirmation that you are fit to travel. It is not recommended to travel abroad until at least 6 months post transplant.
If you need a vaccination for your holidays, please be aware some vaccinations you may not be able to have after having a transplant. These are usually live vaccines. For added safety always check with the coordinators beforehand. Please see section in main menu under vaccinations.
Q . Do I have to pay for my Medication/Tablets?
A . Yes, unless you are exempt from costs (NHS). If you do have to pay for your prescriptions get an annual pre-payment card, this can save an enormous amount of money as with this card any prescriptions are covered under the payment. Please see http://www.nhsbsa.nhs.uk/1127.aspx for more details.
Q Can I eat what I want after a transplant?
A Generally speaking you can, unless you have some other underlying medical condition. The only thing you have to be made aware of is Grapefruit/Grapefruit juice, Seville oranges (also found in Marmalade) Earl Grey Tea, and Pomegranate these are not allowed to be taken as it can reduce the effectiveness of your immunosuppressive drugs. It stops the absorption of the anti rejection drugs into your bloodstream.
Q Can I find out where my liver came from and about my donor?
A Yes, this can only be done through the Transplant Co-ordinators, certain things will not be made available due to patient confidentiality, for more information see DONORS in menu on main heading.
Q Do patients get confused with liver disease?
A With severe liver disease, the liver cannot remove toxins/waste products and these can be carried to the brain. This condition is called Encephalophy. Symptoms can range from, minor lapses of memory, slurred speech, confusion and in severe cases can cause unconsciousness.
Q Is cirrhosis only caused by alcohol abuse?
A No. It is a popular misconception that cirrhosis only affects people who drink too much alcohol over the years or drug abuse. In fact there are many children with liver disorders. However alcohol abuse is a common contributory factor – a fact that is always well publicised. The biggest increase of liver disease nowadays is obesity, causing Fatty liver and cirrhosis.
Q How long will I have to wait for my transplant?
A This is a difficult question to answer, it depends on how severe your liver condition is and other factors, and dependent on your condition how soon a liver will become available.
Q How long will I be in hospital?
A Again this is a difficult question to answer, it could be a matter of 5 or 6 days or a few weeks. A lot depends if you have any other underlying illness and how well the new liver takes to settle down and also to get the balance of your medication correct.
Q Do people with liver disease have difficulty obtaining travel/medical insurance?
A This can be a problem with a liver condition and indeed after you have had a transplant. Do not take the risk and travel without any insurance cover. Check with your consultant to see if you are fit to travel, this is always a worthwhile thing to do even after a few years after your transplant. The prices can vary quite drastically, so always get several quotes.
There are companies listed in the main menu under travel insurance. PLEASE NOTE: These are not endorsed by the support group, neither do we have any association with them. They are there purely as a guide line for you, as a lot of them specialise in pre and post medical conditions.
Q . Will my EHIC card cover me for my insurance needs (UK) citizens only?
A . No. The EHIC card will only cover you for general conditions in foreign countries, it does NOT give you specialised cover. Such as hospitalisation and repatriation back to the UK if it is needed. Make sure you are adequately covered.
Q Will I need constant check-ups after a transplant?
A Yes, you will need regular check-ups after your transplant, as a general rule for the first 13 weeks after your transplant you will be under the Surgeons, after that you will be referred back to the consultants. Initially after the transplant the visits will be very frequent, then later on usually 3, 6, or 12 monthly intervals depending on your condition. DO NOT miss the appointments, it is vital you attend.
Q Why am I always cold?
A Your liver helps to regulate your body temperature, if your liver is not functioning as it should, this is the reason why you are always feeling cold, after the transplant things will return back to normal, this can be quite common from sufferers of liver failure. It is not always explained by doctors why you feel this way.
Q Can I lead a normal life after a transplant?
A Yes, generally speaking if you do not have any other underlying conditions, you can lead a normal life, do sport, holidays, return to work etc. and do all the things you were able to before. You have been given a new life ENJOY it!.
Q Are there any restrictions/factors that I need to know about after a transplant?
A Earl Grey tea, grapefruit etc. as explained in what can I eat previously explained. HOWEVER, taking the anti rejection medication does lower your immune system to stop the liver rejecting and this creates a problem with excessive exposure to the sun, and this can lead to skin cancer so use adequate sun block. You are more prone to infection and viruses, especially children with chicken pox etc. and winter seasonal Flu (advice to get annual Flu vaccination). Some vaccines not allowed to have, always check first. Alcohol and smoking will damage your new liver. Advice to abstain all together. THE DOCTORS HAVE DONE THEIR PART IN GIVING YOU A NEW LIVER YOU HAVE GOT TO DO YOUR PART TO LOOK AFTER IT.