Major Worries

If weeks were wishes bloody hell I wish this one wasn't happening . I've been in Birmingham QE for the past 2wks with what I thought was an infection.

It was sepsis that had taken my kidneys down with it.They suspended me from the liver transplant list (which I understand) but now I have to fight again to be reenstated again.The full battery of tests from heart down.

I am so scared this is it.I thought the first time was bad,this time is worse.I feel like I have nothing going for me & I'm going to be kicked off for good.

Here's your hat don't look back!

I really am not coping well with the situation.I view the consults as the enemy & just don't want an answer.I need to be home.

Any advice would be welcome.Coordinators have already been.

18 Replies

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  • Sorry to hear that your going through a bad time don't give up now, your a fighter with that amazing sense of humour that scouse wit of yours you'll never walk alone, I for one will be praying for you, sooner your sorted and back home with your loved ones so chin up it could be worse I looked in the mirror today an I could of sworn it was dot cotton joking aside stay strong my friend xx

  • Hiya sorry to hear you are in hospital. To keep you going I was on and off the list like a bloody yoyo my kidneys were giving up, I had numerous infections, H.E bouts, ascites drains and infected fluid, but we have to keep fighting just take one day at a time. They won't make you do all tests again just for your heart and lungs

  • Hey!, Never say never. I was taken off the list due to a pancreas problem , once my problem got sorted I was soon put back on the list without a fight. Sure being on a ward for a while gets boring but I'm sure it would be for the best. I'm ready to chat anytime if you wish, just be positive . Good luck.

  • Hi

    Hope you get sorted soon and are back on that list. Please take care. Lots of love Lynne xxxx

  • Thank you all for your imput & kind words.It makes it easier knowing that the reviews of the list happen. I feel like I have been written off as I have already had 1 chance. I'm dreading seeing the surgeon's again as things did not go well last time with 2 out of 3 saying no.

  • Got everything crossed that you get more positive news very soon Dude xxx

  • Hi

    It is a real blow for you what has happened. As everyone says take a day at a time. The positive is one didn't say no. This is a truly scary time and like others my prayers are with you.

    All I can advise is make sure you get all of the information you need. You can't fight without knowing what you are fighting. Try to make sure you have someone with you when you ask questions. If possible make sure it is someone who can write things down. Write any questions down beforehand. Showing that you haven't given up is really important. Showing trust in professionals is important, but so is making sure that they are considering all of the facts and helping you make informed decisions. You have the skills to manage your emotions, while you ask them in a professional, way to explain their thoughts and reasons for their decisions, and what the possible alternatives are. Then whatever it is, you will deal with it, because you are that type of person. I will be honest this is the only way I can deal with some of life's curve balls. I do cry and rant but I try to do that away from others where possible. Only very occasionally did hospital staff see me break down and then they took my distress seriously.

    This is a really difficult time, but as others have said they have been on and off the list and eventually things clicked into place.

    Hospitalisation is a difficult and scary part of health problems that has to be dealt with. It goes alongside going to the dentists or filling in benefit forms. Positive thoughts, prayers and lots of good wishes for coping with the present and I know down the road when someone else needs someone to talk to you will be there for them.

    My positive thoughts, wishes and prayers are with you.

    Gx

  • Its great to see all the postive wishes being sent from the other followers to you.

    We send you our warm wishes too and hope you are feeling much better soon,

    Team BLT

  • Hear hear to all the lovely people who have replied to you dudewheresmyliver1.i couldnt have put it better myself..its hard sometimes to count youre blessings..but be sure in the knowledge that were all rootin for you..

    Godbless.xx

  • Hiya suzylincs, your right knowing the right things to say but we all need someone to talk to an express our feelings, I know that I can count on all these lovely people when things are going not has planned, it's a new experience for me as I bottled up everything for so long and this forum has helped me so much, so all my friends on this forum. Stay well and take one step a day love to you all xx

  • Keep strong, keep smiling and know that everyone is thinking only positive thoughts for you! All the best :)

  • I feel so bad for you!! It's a shocking time for you.sending many blessings

  • Thank you for your kind words.

    I'm back in hospital tomorrow seeing another consultant called Dr Multimer(?).Anybody had any experience of him at QE BIRMINGHAM?No clue what he specialises in hopefully it's not giving more crap news.

    To add to all this fun.My husbands mum is dieing.She is too poorly to operate on the broken hip the hospital missed.(StokeRoyal).So more bloody pressure.

    I never feel like giving up but I'm getting pretty close of late.

    Love Dude

  • Professor David Mutimer is a Consultant Hepatologist at QEB. Brief bio on the Consultants Directory [ uhb.nhs.uk/consultant-direc... ] states:- "Clinical service lead for liver medicine, main clinical interests include liver transplantation and viral hepatitis. He has established a number of clinics that specialise in the management of patients with chronic viral hepatitis B and C infection".

    Sounds like you'll be in good hands.

    Good luck to you, hope you get the answers you need to progress.

    Katie x

  • To my knowledge I don't have Hep B or C.I had Acute liver failure.

  • He's the clinical lead on the liver team - that's the main bit. Those other things are what his particular clinical interests are - including Liver Tranplantation. Hepatologists treat the liver and everything possibly wrong with it. Don't fret, you are in good hands.

  • Cheers. I'm normally not so paranoid about things but since being kicked off the list I've been so distrustful.

    Just because you can't see them doesn't mean they aren't watching.lol.

  • You are a real fighter. Getting sepsis is bad enough let alone getting it intolerant of everything else you’ve got going on. You’ve had some very positive advise from others regarding getting back on the transplant list. Try and make sure you have some support with you when you see the consultant. Just having someone else with you can help with remembering questions you want to ask etc. Hang in there and I hope everything works out for you.

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