In Another Waiting Room: So I am waiting... - British Liver Trust

British Liver Trust

38,206 members18,736 posts

In Another Waiting Room

Chelle_ profile image
13 Replies

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!

Written by
Chelle_ profile image
Chelle_
To view profiles and participate in discussions please or .
13 Replies
Millie09 profile image
Millie09

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

Wass71 profile image
Wass71

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.

Best wishes, and take care

E x

Dldtx profile image
Dldtx

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.

🤠DlD

ja1nsa profile image
ja1nsa

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.

Jx

Chelle_ profile image
Chelle_

Thanks everyone.

I know everything will work out in the end just frustrating waiting for it to happen.

I was prodded and poked as I expected today and then had my diuretics increased. So that’s 280mg now! Gonna need a mobile loo At this rate! Lol

ja1nsa profile image
ja1nsa in reply toChelle_

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

bluemoon2 profile image
bluemoon2

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.

Millie09 profile image
Millie09 in reply tobluemoon2

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.

clover90 profile image
clover90

Hi Chelle, you should join the Facebook group, there are regular meetings at Waterlooville. Where Doctors & Nurses have attended.

Dates for 2018

Thursday 11th January

Thursday 8th February

Thursday 8th March - Chair-based sample exercise session with Terri.

Thursday 12th April

Thursday 10th May

Thursday 14th June

Thursday 12th July

Thursday 9th August

Thursday 13th September

Thursday 11th October

Thursday 8th November

Thursday 13th December - Christmas party!

clover90 profile image
clover90

Waterlooville Baptist Church (6.30pm - 8.00pm

Chelle_ profile image
Chelle_ in reply toclover90

Clover what the FB group called xx

clover90 profile image
clover90

A.I.H Autoimmune UK

Hi

How are doing? You are one amazing lady!! Love and hugs Lynne xxxx

Not what you're looking for?

You may also like...

Still waiting...

I wrote a long while back about the struggle I'm having trying to get some actual medical care for...
MissThing profile image

500 Days of Waiting

So that's where we're at. 500 days.... 17 months. Ever feel like your the last one to be picked for...
Chelle_ profile image

Transplant waiting list

My father has stage 4 liver cirrhosis caused by alcohol and has been in and out of hospital a few...

Still Waiting

hi everyone, yep it’s me again….. because I still have not heard anything since my fibroscan two...
Sophia1968 profile image

Is this what jaundice in the eyes look like?

Hi all, first I’ll state that I am a hypochondriac so if I’m just overreacting please tell me....
Yeshua12 profile image

Moderation team

See all

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.