Constantly drained every 7 days, so exhausted all the time

[bushburywolf]

Totally exhausted, can't sleep properly, just hoping that I get to see the consultant at the QE soon, and he agrees I'm fit enough to go on the transplant list, not sure how much more I can take

[lonmallin50]

Hope you get on transplant list soon I was full of fluid before my transplant how come your not on transplant list yet

[bushburywolf in reply to lonmallin50]

Basically I was told/lied to that I was being referred to the QE hospital, but until I was admitted urgently to hospital last December, and I got to see my consultant on the ward, I asked him when I was going to hear from the QE, he said he realised that he should get me referred,I said I thought he already had, but noThen the qe consultant said that I was too weak and ill to survive the operation, but said that they would do some important tests, and changed my meds, I have had the tests done, and forced myself to get fitter, even though it has been very hard, I was told by a liver nurse that I had made a massive difference, so praying for better news now

[McEwan1962]

hi, I really understand how you feel. Pre transplant my weekly day out was to have an ascites drain. My sleep was shocking, terrible nightmares and uncomfortable as the as ites came back. however I got up everyday took the supplements and everything high protein! I was looked after very well by my local team, who were so supportive and 7 months later had the local transplant assessment and then for further assessment to King’s.

However, you can’t live with continual drains and Ithink you need to be pushing (pestering ) for the referral to QE and asking why you haven’t been referred and when it is going to happen. Ask to speak to a dietician if you need help with your diet, a physiotherapist to get exercises to help you get in good shape. Have you a local support group to give you some peer support🫂 keep going, I’m now 4 and a half years post transplant, thanks to an amazing donor🫶

[bushburywolf in reply to McEwan1962]

Thanks for your reply, it's hard, but I do try to get out and about, walk as far as possible, doing everything the dietitian has said, they are really pleased with how much I'm focused on my diet and exercise, but my double hernias are causing me major issues, done everything that they have asked me to do,all the tests, scans, just frustrated that they haven't been in touch about the next appointment with the consultant.they have also mentioned a permanent drain, which is normally done if nothing else can be done, which has scared me a lot, because I had already asked about it, and was told it was for palative care😔 but I said that they might be giving up but im not going to,too much to live for