Frustrated by wait!!!

Just a quick hi to all and a quick update. Went to see my consultant yesterday and he has informed me my condition worsening, I have muscle wastage, appetite gone completely and I am always swollen with water when he examined me he said water was in my skin (not sure what difference is) and my energy levels have gone now. Only positive is that he will contact Leeds and tell them and he said with way it progressing it will push me further up transplant list.

8 Replies

  • Sorry to hear this; i hope it pushes you higher up the list though; good luck x

  • Thank you x

  • Good luck to you.

  • Dear Jojo,

    It's great that they will share information with Leeds and I would check back next week to Make sure that they actually have!

    Hoping that the call comes soon for you Hun,


  • Thanks pear, am at Leeds on 5th of July anyway so I will definitely be on the case x

  • Hello Hun,

    Call me OCD - but I would call them end of next week to check they have it and also - I would ask the GP for a copy of it before I go so I have it to hand if the consultant 'can't find it'... I find dealing with incompetence the best way is to be short competent!


  • Not short - super!

  • Jojo,

    I'm so very sorry your feeling worse! Most, actually all of the symptoms you mentioned were the same as mine, except my fluid was in my belly, so it had to be drained..not sure what in the skin means?

    But no energy, no appetite. I was on supplements as I could only handle soups. I had zero body fat.

    I hope they can tell you more at the hospital. Does it have its own clinic? Mine does..Addenbrookes, so we have all our appointments with them.

    I hope they move you to the assesment phase if it's time, and offer you some relief either way!

    Thinking a good thought for you, and cheering you on!



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