I have had liver cirhosis for a number of years, my UKELD score initially was 59 is now stable around 50-51, I have been on the waiting list for a transplant for over a year.
My problem is I do not see a transplant in sight, I have encephalopathy which stops me from driving, I spend most of my time at home feeling at a loss, seems like I am in a catch 22 situation it's never ending, makes me feel that I want to get more unwell so at least I will know where I stand. Can you enlighten me in anyway?
Being on the transplant list is a very difficult time for the patient and their family: there is a constant tension waiting for a call. It is important to use the time to maintain and even improve (where possible) fitness for surgery. Making yourself more unwell may not help you move up the list and could be counter- productive, plus there is no way to predict when a compatible organ will become available. I am sure you are aware that there is a shortage of donor organs globally. It is important that the patient keeps in contact with the Recipient Transplant Coordinator who should be informed when there is any change in the clinical condition. This is usually done by your treating doctors.
Transplant does depend on your condition and fitness for surgery as well as the compatibility of the donor organ. I do understand this can be a very frustrating time, but this is where you do need to exercise patience. If you are feeling stressed and affected by the process of being on the transplant list there are counselling services available to you either via your local transplant team, your GP services or also via the British Transplantation Society. You may find counselling beneficial and I would suggest you look into this to help with your feeling on being on the transplant list.
Answered by Health at Hand nurses.
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