..my consultant isn’t overly bothered about doing a FibroScan,I’m compensated now so I have the normal 6 monthly bloods and scans and the letter that says no significant change(I’m grateful nothing sinister has been found).I have a constant battle with the Gastro battle axe receptionists to get my reports, because I track my progress(rightly so, and much to their dismay). After being told off for not memorising my NHS no and they will have to ask the consultant and are busy with urgent cancer patients(I understand),I’m still waiting. You see one needs these reports to discuss with the GP(where are they?),because there is no communication between hospital and the GP’s surgery. I spoke with Dr client today and he said very firmly, get your reports and track everything ,mistakes are made all the time(inside intel). So you ring the GP surgery ,wait 7 hours on hold, then you get a recorded messages saying dial 111 or 999, rather extreme dear given it’s my blocked ear I phoning about. Anyway, you could always pop down to the surgery, but if yours, like mine is wrapped in yellow bio hazard tape, surrounded by barbed wire with sirens overhead and all you can see is a person with its head poking through the sliding doors ,bellowing “Have you got an appointment”. Honestly it would be *******easier to board Air Force One!!! Anyway I digress,I would like a more detailed analysis of my liver, because I just do and was wondering if anyone else has been down this yellow brick road.......
Private scan.....🤔🤔🤷♂️: ..my... - British Liver Trust
Private scan.....🤔🤔🤷♂️
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Hi Dean
I think it is a very good idea to have all available information when we are trying to keep track of details that are important such as cirrhosis, cancer, cardiac issues etc.. so you are definitely doing a good job there.
I was led to believe that the fibroscan was only used to determine whether my liver was fibrotic or cirrhotic. Maybe I was mistaken but if not, maybe your consultant is not concerned about a fibroscan because as your last scan shows no significant change, perhaps a fibroscan would not really add anything to the scan reports. I would see that as a good sign personally, but if it would make you feel certain then you should definitely get a private scan.
I've read in the forum of people who have had a private scan.
Dave
Thanks for your reply. So I said to my consultant after my last scan,given I’m 19 months alcohol free and 6 months sugar and salt free,building muscle mass and looking quite good has my liver improved? Like is my liver repairing? He replied, we don’t know how much scarring you have,we might do a FibroScan in the distant future for academic purposes. I’d like to know if it’s getting better or what level of damage I have. Do you see where I’m coming from?
I totally understand pal,I am fully compensated and asked for a further fibroscan,as mine was way high but had a severe colon infection.!, All ultrasounds good,bloods all ok,but he keeps chasing for cancer,but forgot to tell me about last year's find of gallstones,such F ....Ing pain,thought it was normal,!! Should have had repeat bloods from GP in sept Not heard,and to be honest passed caring,have another hospital appointment January,just waiting for the cancellation letter.again,and again,and again,it's that bad they sent me for a booster and came back with a rooster.hey well got to laugh.good luck pal,it's a mine field.but know where your at.!!!
Yes I absolutely understand. The fact that you have worked this hard, eaten healthily and are building muscle mass (always a good sign), compensated and normal bloods, all these things must go to show that you have done significantly well.
You are probably wanting that to be shown in the data. It is always better if we see the information to be absolutely certain.
I wonder if your consultant said "academic" purposes to mean he was going to show your results in class to show what can be achieved with a strict regime and hard work?
You should get a private scan although I don't know enough to say if the result will be able to show the improvement. After my Fibroscan, my liver nurse said they'd book me in for a different scan to get a clearer idea about my liver. So I'm assuming the fibroscan showed the stiffness/ scarring but an US will show anything else.
You seem to be doing very well, but I hope you get the certainty from the scan, it is nice to have the peace of mind that comes with knowing.
Dave
Ohhh I have gallstones,lovely aren’t they...🥴🥴. Who knows mate......🤷♂️
Yes I did wonder about the academic thing? To be honest,I’d like a face to face appointment with my consultant just to have a chat with him ,but I guess that’s not going to happen anytime soon. I’ll definitely look into a private scan. Thanks mate,much appreciated.
Your consultant has all the relevant information. He should be able to give a definitive answer on how well your liver is improving. It would have been nice if he had said he was pleased with the results and how you are progressing. I always think a few words from a doctor go a long way.
I remember when I was jaundiced with gallstone sludge and my consultants words of encouragement helped me lose almost 4 stone... and he only said 1 sentence but it meant a lot.
Yes a few words do go along way. When I was first diagnosed,I sent my consultant an email asking lots of anxiety driven questions. He actually phoned me and said,‘I know it’s easy for me to say and it’s your health,but don’t worry. Thousands of people have what you have and don’t even know it!!
Dean I’m in the USA and these specialists are not very forthcoming here either. Specialist said unfotunately you have compensated cirrosis with a meld of 8. From there I had to ask all the questions. I asked how much of my liver is scarred she said all of it. I read the radiology report and it said the left side is f4 right side without fibrosis. The list goes on. I said can I expect to live a rather normal life she said it’s likely. However getting sick or any surgery’s would impact your liver. There’s also the chance your liver will stop functioning for no reason. I was like wtf?
For no reason!!?? Well you just have to live life to the full,tomorrow isn’t guaranteed for any of us.
Hi 🙂
You are legally entitled to ask for a report of all scans or any consultation reports.
The problem re hospital and gp surgery is the tricky bit especially if the receptionists feel they are the gate keepers that particular day. I'll just leave it like that 😠
But I think patience and perservence is the key (with the gate keepers 😊) call every day, always polite and considerate - did I just type that? 😳 you know that song get on your nerves..(very catching and will now do your head in for the rest of the evening) be a bit like that with them. I hope it helps you get somewhere. You could just sing that to them everytime you call too.
Stick with it. You can break them!
Ps I also was told that my multiple Gallstones were muscular despite being read the scan report over the phone, I asked again, "So that's a no, I haven't?" reply "No not any Gallstones" I did my own homework, got a copy of the report and read the last paragraph "Noted multiple Gallstones" Gob smacked I asked my regular gp and they confirmed yes, sounding almost surprised. I was previously fobbed off with muscular pain, possible cracked ribs for six weeks - I think myself lucky if it can be up to a year then. I've had cracked ribs, I knew it was not that kind of pain. Anyway, I digress patience and a call everyday and that chuffing horrible song! 🙃
Take good care. 🙂
Pps I named my Gallstones 'Matthew', 'Mark', 'Luke' and 'John' ~ 'Golliath' was my Gallbladder but then there were loads so I gave up and just called them 'The Waltons'.
G'dnight Dean boy
G'dnight Dave boy
YOU DARE SAY GOODNIGHT GRANDMA and I'll nut you! 😂 (actually they don't say grandma do they? I retract that nut).
there were loads so I gave up and just called them The Waltons. that tickled me 
Yep! They react like you have just asked what colour there underwear is....!Just my results please!! I know exactly Dean, for a week I was ringing my GP surgery saying I need my prescription I've just got back from the hospital and they have emailed it to you. The receptionist "we haven't received any emails regarding you and your medication" (what...ok) after trying 3 times ringing the hospital (yes we've sent it, the doctors no we haven't received it) I confronted the receptionist saying I've had my chuffin copy through the god damn post....😤 To which the answer was "we have a new secretary starting soon and they will be dealing with all the emails. (They hadn't been fxxxxxg reading them the lying bastards) I had post transplant medication needed to stop my immune system from attacking the new liver..... hahahaha 🤣 jeese aloo!..... What were you saying? Hahahaha! It just is so badly organised. I feel like dragging the hole surgery to hospital and saying look...I mean LOOK dr's and nurses are working here, why can't you? If you resent working in the environment then fxxk off and find something else to do. Don't just sit behind a phone winding people up🤬🙈🙉.
Deano I think we both needed that. Do you have a liver team or are you just under the gastrology department? You can speak with a liver team direct also I have a direct line to the hospital liver nurse specialist who has access to all my results..
Hope this helps buddy (I know the ranting does)
Danny x
Everyone in the NHS are doing the best they can. If you do feel that the receptionist lied to you, you can make a complaint in writing, which I’m sure will be taken seriously. It’s a shame that NHS workers are being described by the language used in this thread.
Is everyone in the NHS immune from criticism then?
Not at all. I am just concerned about the language being used to describe individuals.
This notion that we have to accept second best at times because we have an NHS really annoys me. I’m a champion of the NHS,but we pay for this services.
I anyone lies direct to you and is in the health service not giving the patient the relative information regarding health,,, deserve to be told what we are really thinking.What do you want me to say, "you lying little so n so arrrrre isn't her lying really cute." Never mind about my medication as long as you are alright!
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