So I am waiting to see my Liver doctor in Portsmouth. I am actually I am sure I am a waste in regards to NHS resources! Nothing ever changes. I don’t ever get more poorly. I never require extra treatment. I’ve never seen a nutritionist since being listed and never been admitted to hospital since listed.
I go in they prod my stomach, check my eyes and send me home.
I just turn up then go home. I know there are a lot of people that are worse off than me and I’m not really moaning.....I’m just fed up of forgetting my book when I’m sat here waiting to wait (for the call that never comes)
On the upside I get to go home and do the washing! Yay! Lol.....
I hope your all doing well!
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Chelle_
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Awww chelle.. bless you. I know how you feel ,but not in the transplant way.
I was at QE hospital liver unit, 4 weeks ago.it was so busy!! 3 hours it took, i had my us done, bloods, weight etc.. to wait an hour to see a differnt hepatologist who could not get me out the door any quicker if she tried.. soooo annoyed and so frustrated, all she said was oh your ok.. when asked about my meld she said oh it's improved since last time, its 42.. got home and checked and my meld was 40 in feb.🤔🤨🙄... i often wonder why i seem to get a differnt dr each time i go who can never tell me much..the only one who has was the top dog and dr rajoria .. don't give up hun.. i know its disheartening but it will happen xx
Oh Chelle, you poor thing. I'm not listed so can't offer any experience of that wait. But, I know what you mean about the appointments. I have PBC with cirrhosis and portal hypertension, very large spleen with varacies on and low platelets. My UKeld has been 47-52 for a while. My husband said we either go home thinking it could be soon that will be great or trying to find ways of keeping as healthy as possible to avoid the inevitable!! My emotions go up and down.
I have told my story in depth before somewhere on this site, but long story short, my 41 year old sister died in 2010 due to complications of liver disease caused by alcohol. She bled heavily and they couldn't stop it. Anyway although my circumstances are different I can't help being terrified of the advancement of symptoms. My poor family find it hard to cope with this, and like many of us I feel like I'm sitting on a time bomb. I've had to give up work as my pain, fatigue, itchy sleeplessness was making it impossible to be reliable, putting extra strain on my colleagues. This in turn has made me depressed at times ( although I'm mentally in a good place now).
Anyway, I'm not saying all this for any other reason that to let you know you are not alone feeling left floating in a thick cloud of confusion, frustration and fear!!
I always read your posts and can tell you must be a very bright, bubbly and funny person. I really do hope all will work out soon. But be assured lots of us on here think of you and send many positive vibes.
Frustrating us I have come to believe is partial treatment. I took this month off no doctors poking or drawing blood no mri’s etc... . I just said sorry I can’t visit in May got things to do can you schedule me in for later in June ? They did that and also started to email and call asking questions, even got me signed up on the ChronicCareIQ app. Seems like I can’t get away the nurse ask if I needed to speak with someone I assume she meant a psychiatrist or psychologist, I said I wasn’t available for consultation right now but I will review your request and get back to you later in June. I may have gotten myself into another mess by not following the routine they set. It’s frustrating to hear the same thing feels like that movie Groundhog Day , so I smile blame it all on HE I hope you get to rest and are as comfortable as you can be.
Hey lady, chin up! You do great work and your radio interviews blow us away! I wish I could assist you in some way? Maybe we should form a team - I have plenty resources to kick some ass
Anyway, just wanted to say belt up and stop moaning, you're stronger than this. Been sooo long, it cannot be much longer!!
Take it easy and be positive, you WILL get sorted.
And then …. BOOM!!! You're in …. WOW … YAY!!!! I even shed a tear or 3 … I am so happy for you and really hope you are know about to come out of surgery? Please please keep us informed soon as you can. Which radio stations were you on? Can I call them and get them to wish you all the best? You make us all proud, well done!! Jx
Hi chelle I look on it like this I'm stable at the minute and all these periodic tests are just a monitoring process that we all go through,kinda nice to know that they are taking some interest in us and I'm sure they care to,plus it's for me any ways the only time I get to meet people oh and when I go shopping,sad aren't I,lol.
Your so right! Yes i have a moan at times about my hepatologist..but its the only time i feel like i actually exsist! . The taxi there and back so i can have a chat. Your not sad at all.. i know..i am the same.
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TX to another liver unit
Back in the saddle again
Waiting for tsts
