confused

[Recentlydiagnosed-]

recently diagnosed with cirrhosis, consultant wasn’t very clear and how bad it is, only that I have to get bloods re-done as afp levels are quite hi. Back for another appointment next month unsure of what I should ask am just out here in limbo at the minute confused

[Kingbilly3]

hi sorry to hear your in same boat as me, I got diagnosed with decompensated cirrhosis in march after taking ill, I got told I would be dead before a transplant is available which is approx 4 year, then told I only need to get 6 month scans and that’s it! So basically am trying to find out if am slowly dying but not get told much, av kept off alcohol ten month now but still feel like crap all the time

[Recentlydiagnosed- in reply to Kingbilly3]

Am sorry to hear your news, when I had my last appointment I was told there was a slight improvement in my liver but with a small margin, the doctor could see after an mri scan just waiting about now for my next appointment not even sure what questions to ask or do I even want to know.

[Kingbilly3 in reply to Recentlydiagnosed-]

Yer I know what you mean there is so msny questions but I never ask them !

[AyrshireK in reply to Kingbilly3]

I still don't get "dead before a transplant is available which is approx 4 year" - where alcohol is the cause of liver damage the stipulation now is you have to be completely/committed to being sober before you can be referred for liver transplant assessment at one of the 7 centre's in the UK & usually they insist on some sort of adherence to alcohol support as post t/p abstinence is required and a contract is usually part of the assessment. It used to be you had to have a 6 month period of proven sobriety to be considered for t/p but this is no longer the stipulated criteria.

I don't know where this 4 years is coming into it.

The assessment is usually over a few days (different centre's do it differently). Assessment looks at the state of your health and whether transplant is necessary and whether you are fit enough to receive one. At the end of the assessment a multi-disciplinary team will sit down and look over all information gathered about you during the week and decide to list or not list. Then you sit and wait your call - the average adult wait time in the UK is down to 65 days now though obviously it depends on your level of clinical need and donor liver availability/suitability. Some folks wait only hours/days after their assessment to get their gift and some folks may wait months or even a couple of years.

Key thing is to look after your own liver the best you can, keep yourself fit and healthy. You are always better to keep your own liver going as long as possible because transplant doesn't always hold the 'golden ticket' but once the liver is too far gone and all other treatments tried out then it's the last kick of the ball in many cases and is a life saving operation. There is no criteria to say you have to wait 4 years to begin any transplant process - at least not in the UK.

Katie

[Greengal314]

hi Recentlydiagnosed- was your AST, ALT or ALP high when the alpha fetoprotein was tested? I recall reading somewhere that sometimes the alpha fetoprotein can become raised when there is active liver disease (which would also be reflected by the other elevated liver enzyme results).

My AST and ALP were elevated at first, but they dropped down to normal levels once I stopped drinking and took care of myself. I didn’t have an alpha fetoprotein test until after the liver enzymes were normal. It was low as well.

Hope this helps.

[Recentlydiagnosed- in reply to Greengal314]

Yeah mine were also high, think it’s really the fear of the unknown at the moment, I have quit drinking alcohol, still feeling extremely exhausted constantly though.

[Greengal314 in reply to Recentlydiagnosed-]

Try and focus on healthy diet and activities. Get plenty of rest.

The alpha fetoprotein will hopefully come down along with the other enzymes. The first thing to do is to stop what is causing it. Let the liver have some time to heal and stabilize.

[Confused2024 in reply to Greengal314]

Greengal314 do you mind sharing what your alpha protein was? when I first went in mine was 6 ug/L and in December it was 3 - our range is less than 9...not sure if you use the same measurements? I also heard that it can be an indicator

[Greengal314 in reply to Confused2024]

My alpha fetoprotein was 3.1. My AST 20, ALT 14, ALP 100, INR 1.0. Platelets 143. I only have the one alpha fetoprotein result.

My AST and ALP were higher than normal range when I was first feeling ill. They came down pretty fast when I cut out all alcohol. My ALT was never high.

[Confused2024 in reply to Greengal314]

thats great! what is your Fib-4? What does your Dr say about those tests as we progress and are fortunate enough to improve...

[Greengal314 in reply to Confused2024]

My primary said my bloodwork looks normal, and I should have decades ahead of me to live. He also said that it is unlikely to become completely normal and healthy- it still has some damage.

I didn’t get a fibroscan or biopsy If you do the calculation the FIB-4 is 2.12.

[Confused2024 in reply to Greengal314]

and what does the Dr say about it? It should match what your fibroscan would be but the fibroscan is more accurate. What would your FIB-4 score have been at the start and what it is now is what I am curious about - did you ask the Dr that?

[Greengal314 in reply to Confused2024]

I just now calculated my FIB 4 over the last 2 years.

3.70, 3.48, 3.07, 2.79, 2.12

Now I just need to get it down to 1. 😁

I’m due for an ultrasound soon. I hope it is good. 🙏. If I feel that strongly in the future, I will ask again about the fibroscan but as it stands right now…it’s ok. I don’t feel doomed.

Have a great week!

[Confused2024 in reply to Greengal314]

That’s so awesome!! Ask your doctor what that means to him as a hepatologist when they recalculate…I would be very interested to know!

also be sure to let me know how your ultrasound goes I am hoping for one in February and will let you know as well!

Also you and I are very fortunate and definitely not doomed in the big scheme of this shit show. It’s hard to remind ourselves of this some days but we will do well to keep giving it our alll which we are!

I don’t know if you have heard of the book “reversing cirrhosis”? The lady who wrote it did reverse and she is great…I love that story! Her name is Susan Pryde…her specialist wrote the forward so it is a legit story I believe anyway! I believe I am goi g to do the same…two hours at the gym today 🙏❤️💪

[Greengal314 in reply to Confused2024]

I exercise almost every day. It makes a huge difference. ☺️

No, I haven’t heard of the book but I will look into it. Thanks!

[Yellowsydney]

Hi, there is a section on the British liver trust website about questions to ask your doctor, it may give you some ideas.

britishlivertrust.org.uk/in...

Hilary xx

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Recentlydiagnosed-

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[ScaredDcat]

Wondering if you got the AFP rechecked? Do you know the numbers?