British Liver Trust
12,036 members5,950 posts


Hello, does anyone have any experience of PTLD? I had a liver transplant last Christmas and seemed to be making a good recovery. But then in July I started feeling unwell and rapidly deteriorated. I had abdominal pain, couldn't eat properly, night sweats and viral (EBV) symptoms. Within a couple of weeks I was diagnosed with PTLD (tumours in my stomach and small bowel). The dr seems quite optimistic that it can be treated successfully. My immuno suppression Meds were drastically cut, and I've had retuximab 4 times. Now they are going to wait 3 weeks and then do another scan to see if the condition has improved. I am feeling better in a lot of ways, but not well overall (I'm very weak and fatigued). If anyone else has been through this it would be great to hear from you. Thanks v much!

2 Replies

Sorry to hear of your problems post transplant. I've no personal experience and didn't really know of the condition. I had a look up what the acronym actually meant. For benefit of others details of the condition you are experiencing -

Hope doctors get on top of it for you with the reduction in immune suppression.

Best wishes


1 like


Thank you for the acronym translation – it's so easy to drown in the sea of acronyms on medical forums!


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