Eventually got to see a doctor! But still have concerns.

[Kensgirl3]

After having a letter come through informing me I had cirrhosis stage 4 after having a high score on the fibro scan. I have tried to get an appointment with doctor. I managed to get a appointment with my GP who said he couldn’t really help a lot because liver problems was not his specialty. He told me to just wait for the hospital to contact me.

I had told him I had been ringing the gastroenterology secretary’s to see if I could get an appointment with the doctor who sent me for the fibromyalgia scan.

After leaving loads of messages for the secretary’s to no avail I had to ring PALs the lady was so helpful. She telephoned me back and had for me an appointment to see the consultant the following day.

The doctor who I saw was the doctor who sent me for the fibro scan. He spoke to me about my general health because a lot of time I’m on crutches or in a wheel chair with severe spinal

Problems. He spoke about a recent MRI scan I had had for the whole of my spine. The MRI shows significant narrowing of the spine in the lumber region and compression on my cord.

Having this is now worrying me because when we spoke about my liver and the scan results and blood tests the doctor has said I need a biopsy now to see exactly what’s going on and how far the Cirrhosis has spread or if I even have cirrhosis ( which I find confusing because the hepatolagist who done my fibro scan was sure I had. He has marked it urgent and I’ve heard I have my Pre Assesment next Thursday and the biopsy for the following week.

On the information I’ve been given it says I’ve to lay in a certain position to have it done. It then says after it’s been done I have to lay another way so to make sure I don’t bleed. I don’t know how I’m going to be able to lay for three to four hours afterwards. Also I have to self catheterise which I can only do standing up.

Can anyone tell me what to expect having the biopsy, is it correct about laying still for hours? Any info would be appreciated.

Also can any one help in telling me what these blood tests mean and are they to high. I’ve had abnormal LFTs for over two years now since having my gall bladder out. Apparently my LFTs are getting worse. The doctor had written of late I have seen it getting worse than before My CRP, ESR are increased. ( what are these and what does it mean when they are high) he had also written of late he has seen it getting more deranged with gamma GT 304, Alkaline phospatase 236 and ALT 82 what are these and what do they mean are they to high for me. I’m totally confused with it all. At the moment I don’t feel poorly as such apart from a lot of itching and not sleeping well. These however could be down to my back hurting and I’m having to take morphine.

The doctor also had written that I am posative gastric antibody and ANA being 1:8

Sorry it’s so long! Thank you in advance to anyone who can help me with understanding all

Of this because im totally confused 😐 xx

[Kensgirl3]

Sorry one of the results I’ve written incorrectly ANA is 1:80

[Laura009]

Hi Kensgirl. According to a previous post, your back pain is only relieved while you are laying or sitting, so l don't think that's going to be an issue during or after the procedure. As regards everything else, make them aware of your needs, you won't be left alone for long periods and nurses will be on hand to assist you as and when necessary. There really is no need to worry.

Laura

[Kensgirl3 in reply to Laura009]

Hi Laura

Thank you for replying to me you are right my pain is alleviated when I sit or lay down. However I cannot lay or sit for long periods say more than a hour without having to move. After about a hour I have the most awful aching pain and have to move. However like you say there will be nurses there hopefully to help me. Thank you again for your kind advice. X

[Laura009 in reply to Kensgirl3]

You're welcome. Great that they can do this for you so soon too. Have faith in the medics. They are under an enormous amount of pressure with the amount of patients they are dealing with on a daily basis. But they know what they're doing and do everything they can to help improve our health and well being

L x

[Hidden]

Good morning Kensgirl3,

Unfortunately, no-one here will interpret an individuals blood test result. Different labs use different reference ranges and therefore they are open to misinterpretation.

Regarding the liver biopsy, It is requred that you remain lying down for several hours after the procedure but the nursing staff will be there to support you and assist you through that time.

It may be worth raising any concerns you have regarding your mobility or ability to lie flat at your pre assessment appointment?

Best wishes,

Trust9

[Kensgirl3 in reply to Hidden]

Thank you for letting me know sorry I didn’t know about about different labs using different references. I thought that the liver tests were all the same throughout. It’s very confusing having all the different letters etc with the blood tests. Il ask at the Pre assesment but thank you again for replying to me.

[Hidden]

You are very welcome. I hope all goes well at pre assessment and I am sure the forum members will continue to support you.

Trust9

[one2one]

At least I suppose the Dr you saw was honest with you about his limitations of knowledge regarding your diagnosis. It’s unfortunate that very few GPs have liver diseases as a specialist subject.

However you’re brilliant having got the ball in your court so efficiently, well done you 🥇your first medal ha.

Now the next steps will follow up with your appointment with the gastro’s. It’s a lot to deal with, but you’re get to understand it more readily in time. In the mean time try not to get too worried about it. One day at a time for now. There’s so much to digest.

We’re all here to help you out with your journey in anyway we can.

All best wishes, take care.

Chrissie 👌.