* Pre Liver Transplant FAQs *
Q1. I am hoping to be put on the liver transplant list. What happens next?.
You will have to undergo a transplant assessment to establish then need for transplant and the specific risk benefit ratio to yourself. This will involve a variety of tests and interviews with members of the assessment team most patients will be admitted for a 4 -5 day stay , some patients may be suitable to undergo their assessment as an outpatient. Once ALL the test results are available each patient will be discussed at our weekly Listing multi disciplinary meeting. Patients who are put forward for transplant will be invited to a group education session which they need to attend once before being placed on the waiting list. It is advisable to bring a family member or friend with you.
Q2. I have been put on the liver transplant list. What happens next?
We recognise that the waiting time is very stressful for patients and their carers. It is important that you try and keep as active as possible and eat as well as you can. It is very important that you attend all your clinic appointments both locally and at Kings. These visits help us review how you are doing, the progression of your liver disease and involve other members of the team who can help support you. It is also important that the transplant coordinators are aware of any problems you are having, any admissions/discharges from hospital, any treatments started by your GP or local Consultant, if you plan to be staying away from your home address or plan to go on holiday. If the transplant coordinators can not get in touch with you there is a chance you could miss a liver.
Q3. How long will I have wait for my transplant?
It is very difficult to give a specific waiting time as it depends on so many factors. The average waiting time for each blood group is based on the waiting time of currently listed patients. This can change month on month depending on the number of patients added to the waiting list and of course the supply of organs available is unpredictable. Currently waiting times are Blood Group A approx 2 -3 months, Blood Group O 15 – 18 months, Blood Group B 12 months and Blood Group AB 6-9 months. When matching a liver to a recipient some of the things that have to be considered are blood group, weight, condition of the liver, condition of the recipient. The Consultant Transplant Surgeon has to consider the risks and benefits for each recipient taking into account your current condition and the known information concerning the donor.
Q4. I’m not hungry / not eating. What do I do?
It is important that you eat and drink healthily. Fellow transplant patients suggest that eating small amounts and often is far easier than 3 meals a day. Keeping hydrated is also very important, so carrying a small bottle of water at all times is easy and convenient. If you are having difficulties eating you must let the transplant team know, your diet is very very important as important as your medications. It can be arranged for you to see the dieticians in clinic or they can discuss your problems over the phone. For patients who are followed up at their local centres the dieticians at Kings will liaise with the dieticians there. Supplementary drinks can be prescribed by your GP but these are to supplement your diet not to take the place of meals.
* The Transplant to leaving hospital FAQs *
Q1. How much notice will I get when the Transplant Co-ordinator calls me to say there is a possible matched liver available?
You must be ready to leave immediately as an ambulance will be dispatched as soon as possible. When the ambulance arrives they will expect you to be ready to leave. So plan ahead do have a bag packed with overnight clothes and toiletries from the moment you are put on the transplant waiting list, make arrangements for child care, pet care ect . It is important that you DO NOT have anything to eat or drink unless the transplant coordinator tells you otherwise. If you are diabetic and your blood sugar is low then you must take something to correct this, just let the transplant coordinator know.
Q2. How do I get to hospital when the call comes?
The transplant Coordinator will arrange your transport with your local ambulance service. You do not need to worry about this. There may be the very odd occasion when the ambulance service can not help, so it is important to have a back up plan. Please think about how you could get to Kings. If you away on holiday or visiting relatives within the UK please be aware that we can not ask local ambulance services to bring you to Kings you would need to be able to make your own way here.
Q3. How long will I be in hospital after the transplant?
This depends on many factors but is generally 10 to 21 days after the operation.
Q4. Will I have pain?
After such major surgery it is inevitable that there will be some discomfort; however, staff are receptive and understanding of requests for pain relief.
Q5. How soon may I have visitors?
Relatives will be allowed to visit you but we would request that only close family visit and that numbers are restricted. If family members have the cold or flu they should not visit until they have recovered.
Q6. When can I start walking/get out of bed?
The physiotherapists will aim to get you out of bed and sitting in a chair within 24 hours of the operation. You will be encouraged to gradually increase your activity on a daily basis. By the time you leave hospital you should be able to climb a flight of stairs independently.
* Post Transplant FAQs *
Q1. How often do I need to come to Liver Outpatients Clinic?
Depending on your recovery expect Outpatient appoints to be weekly, then fortnightly, later monthly etc over a period of about one year. From about 12 months post transplant, again depending on recovery, gaps between appointments increase and can quite usually be at six month gaps.
Q2. I’ve left hospital. What next?
Your nominated GP will have been advised of your progress and your dosages and types of medication. Make an appointment to see them straight away. It is important that you look after yourself after transplant, it is advisable that for the first three months whilst recovering and on higher doses of immunosuppressents that you avoid enc losed crowed places i.e. the tube during rush hour, large gatherings i.e. football matches / concerts. If friends or family are not well ask them not to visit until they have recovered. Initially you will try easily for that reason when going out always consider how you are going to get to your destination and return. Many post transplantees will exercise caution by using antiseptic wipes and lotions during these three months, good personal hygiene is important to help prevent infection. All food must be properly cooked and if not eaten must be cooled and stored properly and should only be reheated once. Fruit and vegetables must be cleaned thoroughly before eating. At all times in the future avoid any product containing Seville Oranges, Grapefruit and Star fruit. Also avoid shellfish, unpasturised soft cheese, raw meats and uncooked egg products.
Q3. How do I look after my scar?
Keep it clean. Avoid touching it. Don’t pick it. Only use oils once it has fully healed.
Q4. How long do I take steroids for?
Most patients will be on a reducing dose of steroids, by three months they should be off steroids. However if you were on steroids before transplant then you may be kept on a low maintenance dose. It is important that steroids are slowly weaned off you should never stop taking them suddenly.
Q5. What do I do if I miss my medication?
Please phone the transplant coordinators and ask for advice. Advice given will depend on the individual circumstances.
Q6. What do I do if I miss my Liver Outpatients Appointment?
If you are unable to attend clinic please call and let them know in advance. Your appointment needs to rebooked as soon as possible. It is very important if you are a new transplant patient that you are seen frequently. If you can not attend because you fell ill them you should contact the transplant coordinators and let them know.
Q7. I have turned yellow but don’t feel ill. What do I do?
Contact the Transplant Co-ordinators at King’s College Hospital as soon as possible. They will seek advice form the medical staff and let you know what you should do. This advice applies at anytime after transplant.
Q8. I feel very ill. What do I do?
Your first point of contact is your GP or your local A&E if necessary. It is important that you are seen and assessed as soon as possible. There is always a liver reg and a transplant coordinator on call 24 hrs per day at Kings College Hospital. Your GP or A&E doctor can talk to the liver reg for advice bleep via Kings College Hospital switchboard.