Unsure what to do?: Yesterday [Friday... - British Liver Trust

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Unsure what to do?

tipovtong profile image
13 Replies

Yesterday [Friday 22nd Sept] I recieved a call from the Hospital treating my Cirrhosis to inform me they have had a request from my Heptoligy Doctor for a Biopsy due to them not being able to determine the cause of continued elevating blood results, they have had a cancellation for Monday [25th]. This was around 4pm, I said that I was Ok with this but she then informed me that i wouldn't be discharged unless I was accompanied! I told her that my daughter is the only person thatI can ask,but she is on holiday in spain with my grandkids and back Sunday night so I would have to contact her.

I did at 4.50pm and couldnt contact the hospital to confirm the number she gave me said dept was closed.

Dilemma have now is doI turn up 7.30 Monday as per instructionswhich in involves a £42 taxi journey and Not sure if i'm ok to take my Insulin & other meds just to be turned away?

Or do I temp getting a "Did not attend" on my notes and not hearing anything else for another 6 months??

Sory so long!

But any advice is much appreciated.

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tipovtong
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13 Replies
Kristian profile image
Kristian

Give them a ring Monday morning before you set off. Or see if you can contact the ward directly today. Ypu may have to do a bit of digging to get the right one and the number, but if you can get through then they may know if you are listed to attend Alternatively, ring the main hospital switchboard today. Explanation your situation and ask them if they can help find out. Have you hospital or NHS number handy as it'll make it easier to find you in the system. Good luck

Roy1955 profile image
Roy1955

Turn up as requested.The message was that you would not be discharged same day if not accompanied (that means an overnight stay) not that you would be turned away!

Aotea2012 profile image
Aotea2012

You need to go. I would ring the switchboard and explain…there is normally a senior nurse/bed manager around every day. They deal with all the admissions for the following day. You will be able to ask them about your meds. If you really can’t get hold of someone…turn up anyway. You need this investigation done, your consultant is treating it with some urgency. It will help them determine the best form of treatment for you…which is better sooner than later.

sophiaS1980 profile image
sophiaS1980

I don't understand why they are putting you through a biopsy if your diagnoses is cirrhosis, it is treated the same way unless it is PBC, and you can usually diagnosed that with bloods, I had a biopsy and left on my own but maybe there is a reason you have to have someone with you, hope all goes well.

AyrshireK profile image
AyrshireK in reply tosophiaS1980

If they don't know the cause then they will often do a liver biopsy, auto immune hepatitis for example can't be identified purely on blood tests alone and a biopsy is often require to establish that. They need to know the exact cause so that an appropriate treatment regime can be started. In AIH they will often do repeat biopsies to check for active inflammation within the liver tissue - my hubby has had two during his liver journey. One regular one through his side and then a transjugular liver biopsy - both done with an inpatient stay.

Katie

tipovtong profile image
tipovtong in reply tosophiaS1980

Hi Sophia, the reason or the biopsy is that my bloods [LFT] have been abnornormal ALT & ALP arearound triple what they should be and my GGT is just under 2000 u/L & B12 is >1400.

They recntly sent me for a CT scan and MRI but no indication of the cause.

I was also admitted to A&E in June with DKA [Diabetic Ketoacidosis] and started on insulin.

One of the markers that indicated this to my GP was swolen U/R/Q abdomen,weight loss and tiredness,which if my GP [Locum] hadn't identyfied and sent me straight to A&E [i had never heard of DKA] I was told that I was close to being in a serious, posibly fatal situation if I hadnt gone on ask my GP and he hadn't identyfied this!

I am guessing that because of my latest issue's being of a similar nature as i get when my Cirrhosis is playing up that they informed my Hepatolagy Consultant .

I was diagnosed with cirrhosis in around 2017/18 after treatment for chronic Hep C & B which was due to drug missuse in the 80s [pre AIDS/HIV] which because of the geno type & high load over decades had left my liver in a "sad" state.

tipovtong profile image
tipovtong

UPDATE!

Thanks for the replies. Yesterday I called the Hospital switchboard and explained the situation,the young lady checked on her system and could see the consultant requested the biopsy on 14/09,but it wouldn't show on what info she had access to if I had been contacted .

She tried to connect me with Imiging,and other dept's but nobody answered,so she took my number and paged the rellavent pagers [around 2pm] .

She called me back at just before 4 to update me [she was finising and wanted to make sure I was aware] and told me she had not been contacted from any of the dept's involved so she had emailed [internal] them and explained my situation .

She told me that I wssn't to turn up unless I heard from them first.

She said because I phoned and they could not confirm that it would not be a "DNA" which was my biggest concern!

Again thank you all for your replies👍

Roy1955 profile image
Roy1955 in reply totipovtong

You should still go.

tipovtong profile image
tipovtong in reply toRoy1955

Had to be there for 7.30, soI would have had to leave before 6am and get a taxi which would have cost me around £45 [I am on benafit] ,if they had turned , Ime away I couldn't have claimed this back and i struggle walking as I have ulcers on my left foot [due to diabetes] and cannot go very far, I have to use use 2 sticks to get around.

The thought of having to come home on the bus terrifies me as I haven't rally been in the situation of not being able to take a break or go to the toilet when I need to.

This is what was my main anxiety about the whole situation

AyrshireK profile image
AyrshireK in reply totipovtong

* Just as an aside - depending on what benefit you are on you know you can claim back your travel costs. My hubby (who was on ESA at the time) was able to claim travel to and from all appointments (own car) plus overnight costs when we took the caravan through to Edinburgh for early appointments when we couldn't travel on the day plus parking charges.

Might be worth looking into for the future. nhs.uk/nhs-services/help-wi...

I think I would have gone to the appointment today but I see where you are coming from in not having confirmed the appointment once you knew you had someone who could accompany you today.

Katie

tipovtong profile image
tipovtong in reply toAyrshireK

I am aware that I can claim travel expenses but if I get there and there and have no booking I will be left having to substantiate my reason for the refund if I didnt have a confirmed booking. That thought of having to go through the red-tape and try and get a refund for the cost puts into a near panic thinking about ,especially as cashiers office is next to general reception at thte entrance to the hospital and I don't do "public areas" very well👍

But thank you.

juneblue profile image
juneblue

Hey there. In the US, they usually always say you have to leave with someone. It’s a liability issue. I’ve left many times on my own. The main thing is they don’t want you driving. In your case, Your taking a taxi. If you weren’t able to leave for a medical reason they wouldn’t discharge you at all. Good luck with everything.

tipovtong profile image
tipovtong in reply tojuneblue

I was told that was the same reason and I had to confirm that I had someone with me overnight in case of complications .👍

And also the only way to avoid this would be to drive and that was an "ABSOLUTE NO!"

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