The wait...... not knowing

[Trevy]

Anyone out here In similar position ....... it's all new..... bloods > ultrasound > GI still to come............

[gamesmaker]

I do feel sorry for you. We have all been there so we fully understand. The problem is that the consultant at your hosipital needs ALL the information he gathers, to make a full assessment and eventually a diagnosis and the correct advice for necessary treatment. Partial results = only a partial assessment. Good luck! See what booklets are available from the British Liver trust, as and when required. They are excellent.

[Trevy in reply to gamesmaker]

Hi @gamesmaker and thanks for reply. How are you doing ? I am just in bed now after one hell of a day ..........

Well am I potentially gong to be no more clear after the first GI visit? No idea what they do On a first visit ...... just a chat and info gathering ?

[gamesmaker in reply to Trevy]

Hi. I have a background in nursing so I am quite happy to tell the doctors exactly what I want - so when I have an endoscopy I make sure they give me all the pain relief I am written up for. I can honestly say that makes it all bearable. It is important to feel in charge!! Another thing I do is I try and take someone who I trust and know well with me to the out patient appointment - two pairs of ears are better than one. And you can verify with your friend / relative that you did actually hear what was said. They are a great support for you. My immediate family could not live further away (I am talking thousands of miles) but they have moved heaven and earth to support me - and if they cannot be there in person they discuss with me who I would like to be there for me. Take everything a step at a time - and good luck

[gamesmaker in reply to gamesmaker]

everyone Is different. The most important part of the early outpatient appointments is to get the base line for that patient. We all have different problems - for me it was oesophageal banding for varices. Do not worry about all the new words you will come across - just keep asking them to explain. I have been stopped from driving now because of the hepatic encephalitis (HE) - that is a real nuisance because our village has a rubbish bus service. I always used to rely on my husband for lifts, but I am now a widow. . Please ,please, please try and take one step at a time! Good luck and keep asking questions on this wonderful forum!! If your friends offer to help - just say 'yes please' - you would do the same for them!

[Trevy in reply to gamesmaker]

Thanks @gamesmaker will reply proper weekend

[Hidden]

I think things were a little different for me than they would be for most. My GP knew my GGT was high, but didn't connect other symptoms to possible liver issues (because I have other medical conditions that would cloud any GPs judgement and hide what was actually going on), and so I ended up being rushed to hospital after vomiting copious amounts of blood for several days running.

However, I'm still alive to tell you that liver problems aren't necessarily a death sentence. I was given six months after my diagnosis of cirrhosis, and that was almost 4 years ago. I'm not cured (I never will be) but my cirrhotic liver is mostly functioning, and my cholesterol level is only a minor issue from what I can gather from people who are dealing with it themselves. I have no ascites, the varices closed up, and I have no spider nevi or any other symptoms. My malaise comes from diagnosed CFS (I was walking up to 5 miles a day until that struck me down).

Please try not to worry too much, and remember that we're all here to support you xx

[Trevy in reply to Hidden]

Hi @Tarantulagirl and thanks for your reply

Means a lot to know that there are people who I can reach out to ...... I have not spoken much to anyone close to me about any of this as yet - there is nothing to talk about in any event

Up and untill I get news confirmed, I need juts hang ten

Like your attitude and I must say I have been blessed in many ways wrt my health and life expectancy

Pretty much had a death sentence approx 17 years ago and somehow pulled out of that with help end medication ... here I am 16 odd years later and still going strong ..............

Next chapter to understand if there is anything the matter with my liver and what iit means .... what can be done :...........

Please tell me more about yourself .......

I am 42 uhh almost 43 and I am married with two dogs

[Hidden in reply to Trevy]

I don't think I'll live as long as the average person, but this wasn't the first time that I managed to cheat Death. I'm a stubborn woman, and I've taken great pleasure in sinking Death's battleships every time he comes for me.

I'd try not to worry too much, as the liver can repair itself to a degree - even if you have cirrhosis (mine recompensated and I've been told that a transplant won't be necessary). Obviously it will deteriorate over time, but I'm likely to have decades yet - and you probably do too. I was on water tablets for a couple of years, but I don't even need those any more because I've never had ascites again (I had my stomach drained while I was in hospital. Six litres of fluid were removed and I had to pee the rest out over time, so I probably lost at least fourteen litres altogether).

As to telling you about myself: I'm 43, married, and have an autistic son. I've been a fan of Doctor Who and scifi in general for my entire life and - as the name suggests - I keep tarantulas. I used to be really arachnophobic, but started studying spiders nine years ago and have been keeping tarantulas for almost four years now

[Trevy in reply to Hidden]

I will respond when I have time but wanted to say thank you !!! Thank you !!!!

We re both 43

[Identity75]

For me, so far, the initial wait for diagnosis was the worst thing. This was primarily because so many things seem to get thrown about. Cancer was talked about, AIH, transplant etc. It was overwhelming for me and my partner. I was very much of the mind, especially as time progressed that I didn't care what it was I just wanted to know and then I'd get on with it and deal with it.

It's a horrible pressurised time. But it's for the best. They need to get the diagnosis right. Hang in there.

[Trevy in reply to Identity75]

Great advice ! But as you joke hard to follow

Thanks so much your reaponsr

[RodeoJoe]

Yes absolutely. I spent 15 years with diagnosed cirrhosis with no idea what was the cause. Untold numbers of tests and after a while there was still no known cause and I was labelled with Cryptogenic Cirhosis (meaning cause unknown). No predictions could be made about if the condition had stabilised or if it was progressing as tests were constantly fluctuating.

After 15 years between 6 monthly consultations my liver started failing and I was assessed and listed for transplant.

It was very difficult. I had to go into a sort of denial about my condition in order to get on on with my life.

You have one advantage over me though, you have found this web site. There are many others who are experiencing the same.

I'm 44 with 2 kids, partner and her son. One dog and 2 horses.

[Trevy in reply to RodeoJoe]

Wow @rodeajoe want to hear more !!!! Thanks reply will respond proper later

I am lucky indeed for being in here and meeting all you wonderful and insisting peepa

[Hidden]

Hi Trevy,

As you have already read, there are many fantastic people on the forum who have been in your position and are very supportive.

You may find it useful to have a read of some of The British Liver Trust publications, especially 'Liver disease tests explained' and 'Living with liver disease'.

Here is the link to all the publications.

britishlivertrust.org.uk/pu...

Our helpline is open 10-3pm Monday to Friday if you would like a chat- 0800 652 7330

Warm wishes,

Rebecca

[Trevy in reply to Hidden]

Will look into it!!! Thanks @BLTRebecca

[Mummymoors85]

Hi trevy

It's so bewildering isn't it.

I'm 5 years on and still waiting to find out what's going on.

I do find it funny that just because you don't have a diagnosis there is nothing wrong with you. 🙄. I wouldn't mind If get this from people I don't know but I get from close family members and my own husband. It is driving me insane.

I do you get your answers soon. Xx