Finding out that you may need a transplant can feel overwhelming, but you will be guided step by step through the process by your transplant team. Initially you may be invited for an outpatient appointment where you will be able to discuss your health history and the transplant team will explain generally about the transplant process. After this, if it is felt that you are a suitable candidate, you will be invited for a full transplant assessment. It is helpful to have a relative or friend with you and take a notepad and pen in case you want to make a note of any information. It is also helpful to jot down any thoughts and queries you may have beforehand.
A full transplant assessment usually involves a hospital stay of 3 to 5 days and a series of extensive and relevant tests for your condition will be planned. The transplant coordinator will explain and support you through these. There will be blood tests and standard clinical observations e.g. height, weight, blood pressure etc. You will have an opportunities to meet with other members of the transplant team e.g. consultant, surgeon, dietician, physiotherapist, nursing staff, who will explain more about the whole process, the risks involved and the drugs you may require post transplant.
There may be several outcomes following the assessment: you may be suitable for a transplant; you are suitable, but may require further tests prior to being listed or transplant may not be the best way forward for you. If a transplant isn't possible then other suitable options will be discussed.
Once it is confirmed that you are suitable for transplant you will be placed on the live transplant list and the transplant coordinator will advise you about the dos and don'ts while waiting for your transplant call. You will be given advice on what to have packed ready for your call, about travelling away from home and you will need to be contactable at all times. You will also attend regular pre transplant clinics so your team can monitor your progress carefully and be fully prepared for your transplant call.
As a patient it may feel like life is on hold while you wait so it's important to try and keep as well as you can both physically and mentally. Try and plan things to look forward to, even though they may have to be cancelled in event of your transplant or your illness; try to live as normally as possible in your circumstances and keep busy with work, interests and hobbies that manageable for you. This can feel difficult at times when you are living uncertainty and feel unwell, but keeping occupied can help distract your thoughts from permanently thinking of your transplant and help keep you positive ready for the transplant call.
It's important for you and your family to make a plan ready for the day of your transplant. A list of contact numbers for family and friends, transport for yourself and family members; preparation for a false alarm (sometimes organs aren't suitable); appropriate bags are packed.