DECIPHER MY RESULTS PLEASE 😕

[mschantelle]

Hi Guy’s

So I’m 2 years and 4 months on from cirrhosis diagnosis along with portal hypertension and baratts syndrome.

I’m none the wiser now than when I was back then, still terrified, still clueless, still not being told anything about my illness or what stage I’m at ( they said at the beginning I had 2 years to live so I stopped drinking there and then and have not touched a drop since)

I was sent for a transplant assessment but was refused on the grounds I have no social support, no family around me or anyone to help after surgery.

Since then I have improved a lot but I am extraordinarily tired and have put on 2 stone in weight.

I hardly ever see a doctor, never my gp, a local specialist maybe twice a year and kings college 2-3 times a year, this scares me massively as I don’t feel like I am being monitored correctly or enough, I’m afraid of slipping through the net and it becoming too late for me to be reconsidered for transplant.

I hate taking all these pills constantly

I’m on this list of pills plus lactol ode which I cannot bare so I don’t take it.

I stopped my medication about a month ago, all of it because I’m sick of seeing all the bad things that can happen. I have not told the doctor.

I have a set of bloods taken a month after I stopped and nobody as usual has explained them to me.

If Anyone knows how to read them could I please send them to you ?

Also if there is any reason I should definitely take one or all of the meds?

Thanks in advance x please let me know if I can post you my results

[Hidden]

The situation you are in is an awful one to be in when you have no support or family. By stopping taking the things listed in the photo you posted without telling your doctor you are likely making things worse. You should be being regularly monitored by a specialist given how serious your condition is.

The photo you posted lists two vitamin B supplements—thiamine and a vitamin B compound tablet. These would have been prescribed because a deficiency of B vitamins is common in people with cirrhosis.

There is also a drug spironolactone which helps remove excess fluid from the body. It would have been prescribed because fluid accumulation is a common side effect of cirrhosis. The two stone in weight you've put on is likely to be fluid accumulation because you stopped taking the spironolactone. If I were you I'd start taking it again immediately to see if your weight drops as a result.

There is also a drug lansoprazole which reduces the amount of acid produced in the stomach so it's probably been prescribed to help prevent or heal stomach ulcers and/or reduce inflammation in your stomach.

The lactulose (which you wrote that you can't bear to take) is prescribed to help prevent mental confusion (encephalopathy) common in people with decompensated cirrhosis. You should at least take it if you are experiencing even mild mental confusion. By not taking it you are increasing the chances of toxins building up in your brain and winding up too confused to help yourself by taking the lactulose.

[Brett11 in reply to Hidden]

Well said Edward.

[Hidden]

I think you should make an appointment to see your GP asap and say all you have written here . Stopping prescribed medication for your condition is dangerous. You need to put your questions to your GP. If you show them interest and concern about your health and condition you are much more likely to gain their care and respect. By not seeing your GP regularly they will assume you are chugging along nicely on the medication you have been prescribed.

Good luck

[mschantelle in reply to Hidden]

I don’t see him because he is insensitive to my illness. He thinks well perhaps you shouldn’t have drank so much should you.. if only he knew the half of it. That’s irrelevant anyway.. I don’t see him because he doesn’t like me

[Hidden in reply to mschantelle]

Change GP?

My husband was diagnosed with alcoholic cirrhosis and the care he received from day 1 with the GP to every hospital visit right to the end of his life in intensive care was 2nd to none. Once he admitted to them he had a problem, they treated him above and beyond what even I thought he deserved at the time. Bless our NHS ❤

[Hidden in reply to mschantelle]

Ps my husband had to take vasts amounts of medication due to all the illnesses alcohol had caused. He used to carry 2 carrier bags around with him.... 1 for all his meds the other full of treatments to counteract the side effects of the meds in bag 1. He HAD to take them, if he hadn't he would have died a lot sooner than he did.

[mschantelle in reply to Hidden]

Sorry to hear that your husband died. Was he well at any point from diagnosis or did he decline right from there? Was there ever a good outlook for him or were they straight with him from the outset?

I worry that maybe they know my outlook is bleak so there’s probably no point in surgery and they just don’t want to be the one to tell me that. I don’t feel like the end is imminent but then I worry that I’m overlooking symptoms or fooling myself and ignoring them. I worry that one day I’ll just keel over and the kids will find me after school.

I worry endlessly to be fair about every scenario you could possibly imagine 😞😞😞

[Hidden in reply to mschantelle]

He was addicted to alcohol. Couldn't give up despite being told by docs and specialists if he didn't quit he would die. He got 1 to 1 counselling which worked but by then he was yellow and desperately ill and died 3 months later.

People with cirrhosis can continue to live for many years so long as you give up alcohol for good, eat a very healthy diet , exercise regularly and take all medication prescribed. You need to see a gp to talk through your worries and get a good doctor patient relationship going. You will get far better care, empathy and treatment if you work with them rather than seeing them as the enemy.

There are a lot of wonderful courageous people on this forum living with and struggling with illnesses and effects of years of alcohol addiction who can advise you too.

Good luck

[mschantelle in reply to Hidden]

It’s very sad to hear that even facing his mortality that he could not say no to the drink, it just shows you the absolute power it can possess.. some people think ‘ oh don’t be so ridiculous.. you just don’t drink .. end of story’ but they just don’t know. I think you have to live it to know it.

Oddly enough I was just too unwell to drink, I couldn’t lift a glass to my face, I just one day became desperately unwell, after going into hospital and on huge amounts of steroids etc hearing the words.. you might die.. then seeing my kids faces, it just terrified me that I’d leave them to face this world without me. In all my years of drinking it never once occurred to me that I could die from it, not once, I had a few drinks .. before bed, every night, for 2 decades 🙈🙈🙈 nevertheless thankfully that was enough for me, my poor kids, my poor father, I’ve never touched a drop since and by the grace of god I never will.

My hope is probably the same as everyone else’s, I get a 2nd crack at this life because I was a bit rubbish at the first.

I don’t see the doctors as the enemy, as previously mentioned my GP does not like me

I’m not paranoid, he doesn’t ..end of lol, as for the specialists I see that they are busy, overworked, they live this illness along with us day in day out so they presume that I know about the illness, they presume I’m informed they presume I am aware of my situation and I’m not, not remotely, not even slightly

[Angelann69 in reply to mschantelle]

I feel exactly the same as you do. I live in the US and our docs just have their noses close to the computer screen instead of looking at you. I also have quit taking my thyroid and vitamin D because I've just kind of given up on our healthcare system. Thanks for posting. I will start taking my meds as prescribed starting tomorrow. I hope you do to. We need to do it for ourselves.

[mschantelle in reply to Angelann69]

I’m back on mine x good luck to you ..hope things improve for you and you get the help and support you need x

[Angelann69 in reply to mschantelle]

Yes, it turns out I'm pretty sick from stopping the thyroid meds. I'm back on it now.

[AyrshireK]

All of these meds would potentially keep your condition stable and each has a very important purpose as detailed by Edward 1952. You are receiving far more monitoring than my hubby who sees a local consultant every 6 months and a specialist at Edinburgh once per year.

Sorry that you didn't get listed due to your social situation BUT if you were to go in tomorrow again you probably wouldn't get listed due to non-compliance with medicinal routine. Medics are doing all they can to treat your condition and you need to do your part otherwise it's all a waste of time and you will get ascites, oedema, Hepatic Encephalopathy etc.

[Isabelle2]

Hi mschantelle

I can only agree with the others. You must go and see your gp. It’s a tough diagnosis which can make us feel down. You appear to think things are hopeless but believe me you’d be better to have a chat with the gp and to let them know how you feel. Good luck. Isabelle

[mschantelle in reply to Isabelle2]

He just tells me to wait and ask the specialist, and when I see the specialist he says well it’s hard to say, I don’t have a crystal ball 🔮 🙈

[AyrshireK in reply to mschantelle]

What is it you specifically want to know from your medical team? What support do you want from us on here? You need to take the meds as prescribed, they are the treatment put in place to ensure you have the best chance going forward. You see your medics far more than most and indeed most of us don't get to discuss blood results .... just get told you are stable, carry on doing what you are doing. No one, not even the best doctors in the land can predict what might happen in the future, how long you'll remain stable etc. But one things for sure by not taking your meds you do stand a very real chance of going down hill and possibly very quickly and you don't need to. That's why everyone takes meds, no one likes doing so but they are necessary.

Before your next specialist appointment make notes of your current med regime (which hopefully you will resume), any symptoms you've been having and any questions you have and make sure you make the most of your appointment and get your questions answered. It is easy to go completely blank and lose the thread when in consultation, with it written down it will help. If you can get a friend or someone to go with you that would help too, two pairs of ears are better than one.

Katie

[mschantelle in reply to AyrshireK]

I want them to tell me what they see on the scan, I want to know just how bad the damage is and what they think the outlook is, I want them to tell me how unwell ( or well) they think I am, they literally tell me nothing. I’m so frustrated, I need to know where I am on ‘ the scale’ so to speak and everyone tells me to talk to the other one.

I will take my medication again.. it’s never once been reviewed in 2 n a half years which is why I worry about it

[AyrshireK in reply to mschantelle]

When is your next appointment? You sometimes need to ask the questions. Certainly my hubby and I have seen doctors who volunteer nothing but if you make yourself aware of the condition you can guide the consultation and get some answers.

When you have cirrhosis that's pretty much the only diagnosis or scale they can tell you. Cirrhosis is either then classed as compensated where it is managing to full fill most of it's important functions or decompensated when it is seriously struggling and you are likely to have more of the serious and potentially life threatening symptoms.

My hubby has cirrhosis - diagnosed April 2012 after almost dying from a massive upper GI bleed due to burst varices. His condition is due to auto-immune liver disease. He sees a local gastroenterologist and only began going to liver unit in Edinburgh over a year after diagnosis. For a spell he was on the transplant list but delisted after 10 months. He had varices repeatedly banded but that's really the only 'treatment' he's received. He is currently deemed stable - no one can tell us whether he'll remain this way, get worse or how long he'll 'survive'. It's a case of following doctors orders, living well, eating properly, exercising and fingers crossed you can remain stable. We've never been told any staging numbers or anything like that.

He only has 6 monthly ultrasounds, 6 monthly (or so) bloods and an annual endoscopy. He takes the meds as prescribed and they've never been reviewed. Just added to from time to time. We next see his Edinburgh consultant in June 2019 and his local appointment has actually just been cancelled until April 2019 (was meant to be November 2018).

We just go with the flow, if he's doing ok then he's doing ok, we don't fret the blood test results and trust doctors will act on anything they find but we also ask questions and push (gently) if appointments don't come on time etc.

You are being far more regularly monitored than the likes of my hubby so trust that your docs will act if they notice a decline in your health situation BUT I would urge you to take your meds as prescribed - without them then you almost certainly will decline.

The British Liver Trust page on cirrhosis will be a good help in telling you what you need to look out for symptom wise. britishlivertrust.org.uk/li...

Take care, Katie

[mschantelle in reply to AyrshireK]

Thank you Katie. You must be so frustrated with your husbands illness, I am quite shocked to find out that my situation seems to be similar to the majority regarding appointments and monitoring, I’m probably getting more as you said, I see a specialist in eastbourne who I saw about 1 month ago and another specialist in kings college who I will be seeing in October, I guess I just presumed if someone told you that you are terminally ill that it would be weekly appointments or fortnightly, months at a time is a long time to worry what is happening inside your body. I had a scan today and the radiologist never says too much so I will get those results soon.

I never heard of compensated/decompensated before and I’ve never been told which one I am.

I’m back on the medication today and will maintain this, also I’m debating asking for a fibroscan which would probably give me more information as to where I am.

I’m sorry to everyone who thinks I sound selfish demanding appointments left right and centre, I think if one of them sat down with me and explained things to me thoroughly maybe I wouldn’t be so frantic 🙈 thank you for taking the time out to respond x

[Hidden]

Welcome to the forum where you will be able to get advice and support from others with experience of liver disease. However, this is not a medical forum and none of the members are qualified to diagnose or give specific medical advice.

Users are advised to NOT post test results or scans and request an interpretation from other members. This is clearly stated in the guidelines to both this forum and Health unlocked. Test results vary according to both the individual’s whole health and the specific laboratory / medical team analysing the results. To avoid misinterpretation and undue concerns, results can only properly be understood by a qualified medical practitioner with full knowledge of your unique medical history and circumstances.

Please don’t be discouraged from using the forum as there are members with a great deal of understanding and knowledge of living with liver disease as a patient or carer. They will be able to give you the benefit of that experience with understanding and empathy that can only come from those with first hand involvement.

On the British Liver Trust website you will find a great deal of information about liver disease / health from trusted sources

britishlivertrust.org.uk/

[Yuiop]

My husband couldn't take kaxido either, and asked for the powder form, he has it with a little juice. Works a treat. Ask for it, and they will give it to you.

Your support is so awful, someone needs to be helping you. Speek to your GP about it. I hope things change for you soon.x

[Kristian]

Hi Chantelle,

Good decision to 1) stop drinking and 2) restart your meds after the advice you have received here.

Please try not to get disheartened, your monitoring is pretty much in line with recommended guidelines. You should actually take that as a positive as it would indicate that things are pretty stable. Indeed you said yourself that things started to improve when you stopped drinking and that too is what you would expect. Hopefully you will remain 'too well' to be listed. Do see that as a positive too.

Unfortunately cirrhosis is a frustrating thing. Sometimes there isn't much feedback that can be given. Especially if everything is stable. Do though take some questions with you to your appointments. Ask to see the scans and ask them to take you through them and explain the results. They actually like to do this and want you to ask questions. They tend to not volunteer too much info unprompted as some people prefer not to know. They also probably don't know what you'd like to know too. So do ask.

[Poobear69]

When was your assement? Did you appeal? If not why? If not then appeal the existing descision. You would be be, probably, assessed at another liver unit. I hope that you know have a robust support unit in place. Start with mentioning this forum etc. Don't give up and push a little harder as the assessment process is tough but they are incredible individuals.

[mschantelle in reply to Poobear69]

My assessment was probably 4 months after diagnosis, towards the end of 2016, I was not aware that I could appeal or I most certainly would have 😕

[Roy1955]

If you dont like your GP, or if you feel they do not like you then change GP.

You can look online for patient reviews and also see if one has a particular interest in liver problems.

[mschantelle in reply to Roy1955]

Yes that’s a fair point. How would I go about that?

[Roy1955 in reply to mschantelle]

Start here

nhs.uk/common-health-questi...

[Roy1955 in reply to Roy1955]

See what others say about GPs

gp-patient.co.uk

[mschantelle in reply to Roy1955]

Thanks very much, really appreciate it

[Angelann69]

I can't believe they won't do a transplant because you have no support group. How cold it that? I wish I were closer, I loved being a caregiver and even did it for free a lot of the time. I have only one person to count on, so I'm close to your situation. It's just so cruel. I can't get over this.

[mschantelle in reply to Angelann69]

Ah thank you that’s very kind.

I’m usually an extraordinarily quick healer so I’m hoping that will remain the same, I’m very worried that my young girls (12 and 13) would be forced into becoming young carers, I really don’t want that for them and I try to shield them as much as possible from my illness and fear the days when it’s clearly obvious.

That being said I think my bloods are good and I’m awaiting scan results and don’t feel as if anything untoward is happening but then again I have no idea what I should be looking out for with regards to signs etc.

What a mess 😞

[AyrshireK in reply to mschantelle]

I see you saying you have no idea what your should be looking out for with regards to signs - I previously indicated the British Liver Trust page on cirrhosis is a good place to look as regards signs and symptoms you should be aware of in self-monitoring your condition. britishlivertrust.org.uk/li...

Katie

[mschantelle in reply to AyrshireK]

Thanks Katie I will read it today, I even get scared reading about it all 🙈

[ja1nsa]

Hey lady, long time no chat... you still got my email details? I am also 2-3 years in now, I have not been diagnosed with F*** all. Still awaiting more tests after I decided I accepted death, but would fight till I got diagnosed and paid by my insurance before I went... lots to chat about and glad you still here!! real glad! email me? [e-mail] and we can connect up. John x.