Periods of panic, days of denial...

[Health_matters1977]

Hi everyone,

I have been reading so much on here and trying to find answers but then realised quickly that I should just write my own posts and stop worrying about asking for help. The joys of being a natural born worrier are that I worry if I don’t have anything to worry about - but I’ve taken a good few, positive steps since my diagnosis in March.

I’ve turned a corner with my grief for my dad and finally feel like I’m on the path to starting to accept that this isn’t one of his usual dreadful April Fools - it still hurts like hell but I’ve moved out of the “I might as well just join you/life is totally pointless now” stage. (Some may not know I got diagnosed with cirrhosis within three weeks of losing my dad/hero/soul mate).

I’ve reconnected with my counsellor, been far more open with friends and my fiancé and feeling more positive than negative on more days.

However, I still have moments of blind panic where after a few days of being in total denial I remember that I am actually very sick still. When I have extended bouts of feeling well and happy, my mind convinces me that because I’m eating well, gaining some much-needed weight, have good energy and practically shouting “carpe diem” at anyone who’ll listen, I’m cured....that because I’ve totally changed my lifestyle (zero alcohol, early nights, healthy food, moderate exercise) my liver has fixed itself. Has anyone else had this - either not long after diagnosis or further down the line? If so, I’d be so grateful to read your experiences.

Signs that remind me I’m still sick include fatigue and the best ‘tan’ I’ve ever had. The tan is a hard one as I spend a lot of the year in southern France because of my fiancé’s work (I do my job online so I can work anywhere). I’m brown as opposed to yellow but still have never in my life tanned this colour before. I’m constantly checking the whites of my eyes. They’re certainly not bright, still a little bloodshot but I do wear contact lenses and my partner says they’re not yellow but I see a tinge.

I had an MRI in May but have had no letter or results yet and at my three month check up just prior to the scan, my consultant (who also lectures) told me he’d just had a debate with his fourth year students about whether you can recover from cirrhosis without a transplant- he said it was a misconception that you couldn’t but this just may have fuelled my false hope?

My gums bleed easily and I still get the odd very small, light nosebleed usually when I’m stressed...

I have no pain at the moment and that’s about it!

Sorry to witter on. Hope to hear from some of you lovely people.

Take care,

Beth.

[Hidden]

Hi ! Well done on doing so well..... keep it up !! 💪😁 xx

[Brett11]

Cirrhosis is very up and down. Do you know what stage your cirrhosis is or your MELD score? I find that cirrhosis seems to lay dormant for a while then let’s you know that it is still there. I have F4 cirrhosis which means that I have only 20% of my liver function left. I’m too healthy for a transplant but am still sick if that makes any sense?

Cheers,

Brett

[Health_matters1977 in reply to Brett11]

Hi Brett,

Thanks for answering. I was told that I was 'somewhere in the middle' high stage 2/low stage 3 and that it was a complicated diagnosis because while I had signs of a decompensating liver - ascites being one, jaundice another (though that seems to hopefully be under control) there were other things that didn't add up like everything else being unaffected and having perfectly normal platelets levels. This is when the consultant went on to tell me not to despair and that I could improve...It was a lot to take in at the time and to be honest, I have learnt a LOT more from this forum than through any appointment, time in hospital, other research etc, so I feel I will be far better equipped to ask better questions than previously. I didn't even really bring up my blood results, because I didn't really know what they meant and wasn't offered any information about them. At the time, I thought that was a good sign and that if there was anything major to worry about then they would let me know. Next time I go, I will ask about the blood and many other things.

And yes, I know what you mean about having periods of feeling completely normal and then getting a reminder, like the bleeding gums, the not so bright eyes, the occasionally dark urine, my recent ankle/leg swelling. It can lull you into a false sense of security at times! I think I am probably similar to you, still sick but not sick enough for transplant...

Thanks again and wishing you all the very best,

Liza.

[Gemma68]

I had a similar stage of denial within a few months of my diagnosis. I decided that seeing as I "felt fine" well, better than fine, I decided that I didn't need to be taking the (in my mind) ridiculous amount of steroids they had me on at the time and the immunosuppressants were playing havoc with my hormones. So I just...stopped. It was when I went to see my hepatologist and got my latest blood test results that I got the wake-up call. I hadn't luckily done any further permanent damage, but it was that moment that I realised that as much as I hated it, I would be taking tablets for the rest of my life if I actually wanted to HAVE a life.

So, in a way, I can relate to how you're feeling. This stage does pass, I promise.xx

[Health_matters1977]

Thank you. It's such a strange one, feeling like you say, more than fine sometimes - I often feel healthier than ever since I changed my lifestyle into being completely health focused. I'm not saying I was a complete hedonist but I certainly wasn't treating my body like a temple or with respect at times. I am glad to hear that you didn't cause yourself any damage by stopping the tablets, I often wonder why I don't rattle when I walk...but my lesson was learnt quite quickly when I stopped taking most of mine including the diuretic and my legs and ankles swelled up. I also stopped paying attention to my salt intake - it's easy to feel well mentally and physically and think you're better, I just have to remember it's not a 24-hour bug...and I guess like with so many things, it's going to take a while to adjust and accept - good to hear that this stage passes though - and thanks again for replying xx

[Garyvh]

Thanks for sharing those thoughts, it all sounds very familiar to me.

In a way I almost choose to be in denial and see it as a positive thing.

Not to the stage where I let my guard down re. abstinence, diet, and meds/supplements.

But when I'm having a good spell I choose to live each day 'as if' I'm well, wanting to capitalise on feeling healthy in that moment because I know that tomorrow I might not feel well. And also because just thinking about cirrhosis all the time wears me out mentally.

Thanks again for sharing

[Health_matters1977 in reply to Garyvh]

I think you’re spot on trying to live each day as if you’re well during a good spell. I’m going to take that on board and not get too bogged down by the denial. So, maybe the carpe diem mantra is a good way to go on those days because you’re right again - it’s absolutely exhausting thinking about it all the time and a waste of good energy which of course comes and goes. I think I need to be a bit more mindful, as at the moment, I can look at and appreciate a wonderful view then within the next minute be worrying about insurance, my mortgage being invalid, maybe having to have a transplant, getting worse...etc. But they’re all what ifs and can be dealt with if and when they happen.

Thank you so much for such great food for thought (speaking of which, must be time for my bedtime snack!) it’s genuinely greatly appreciated.

Take care,

Beth.

[grannyd53]

I think it's normal to go through the periods of doubt and denial. I was diagnosed last November from a routine blood test that prompted my doctor to have an ultrasound done which proved not only did I have an enlarged spleen but cirrhosis due fatty liver disease which a doctor for 5 years ago had told me I had and I laughed and said I'm fat why would my liver getting no response from the doctor. Thank God my new position followed up on this and found it in November. I have lost 3 family members to cirrhosis from alcohol so I knew what a horrible death it was and I was concerned with that and suffering too much anxiety. Bottom line I was lucky enough to find a medical research through pinnacle that is doing trial study on Nash my fibroscan in January show the density at 20.8 6 months later it's down to 8. Well there are many side effects to this and I've had them all so we know I don't have a placebo. I have managed to lose 31 lb as the medicine acts as an appetite suppressant yes in the beginning is because you're throwing up and I'm too sick to eat but it levels out. Of course I know I can never have another glass of wine or any alcohol even though my cirrhosis was not from alcohol I know that alcohol would just make things worse and I'm happy with that so bottom line is I think denial is the first stage but hang in there aren't very many studies out there on the liver unfortunately but I think they're starting to see that Nash is becoming very popular that cirrhosis is not just caused by alcohol abuse this being important as we live in an overweight country so hopefully people will start taking more notice with this and if you can find a study on a new drug by all means take part of it you have nothing to lose

Debbi