Fairly new to living with cirrhosis...

[Health_matters1977]

This year, I lost my beloved dad, had a miscarriage and then lost my health. I'm too afraid to tell anyone the extent of my health problems especially the cirrhosis. I was diagnosed in the same hospital my dad passed away in, just a few weeks after - and it was also where I learned of my miscarriage just a few days after dad's death.

I suppose I'm after some support from fellow sufferers...

I have a decent consultant now but I was quite traumatised by my treatment in hospital. The consultants spoke over me, made me feel as though I'd brought it on myself (it stemmed from Hep A - but alcohol played a part), had no sympathy about the loss of dad - we were extremely close and tried to move me to the same ward he was on because it was easier for the consultant.

My initial questions, if anyone can and would be willing to help, are that I have lost about 25kgs in a short space of time. I'm eating for England but my skin is very frail and I feel like a deflated balloon. My urine for the first three months was normal but has recently become quite dark (possibly related to curcumin supplements I was recommended??) despite drinking no alcohol since diagnosis - 114 days - but drinking litres of water...

Dietitian told me to eat, eat, eat including cakes, sugary snacks yet someone else said to avoid sugar?!

As you can gather I'm very confused. Oh and I'm 40 and female if that makes any difference...

Thanks so much in advance.

[carllovatt]

i think you should get some counselling to start with, or write EVERYthing down '' it does help''

as for food eat eat, but be sensible with it not too high in fats sugars, or carbs, and avoid salt

and several smaller meals rather than pigouts

[Health_matters1977 in reply to carllovatt]

Thanks so much. It was a relief to find this forum. Grieving is bad enough but finding out about the cirrhosis so soon after definitely intensified it. I’ve just set up a blog but counselling seems like very wise advice.

Thanks again and have a good Sunday.

[angelalucianaallen in reply to Health_matters1977]

No sugar! It makes it much worse and no simple carbs like white pots, white rice and white bread. No artificial sweeteners like diet drinks. X

[Health_matters1977 in reply to angelalucianaallen]

Thank you x

[Cobwebs]

Ouch! But, yes, counselling sounds like a good option. I don't think anyone will object if you vent on here. Is your partner supportive? And before you answer that, I have kept some things from my husband regarding my liver.

Deb x

[Hidden in reply to Cobwebs]

Hi Deb. How are you getting on ?

L x

[Cobwebs in reply to Hidden]

Oh, muddling along, Laura. Sadly some of my family have seen this as an excuse to cut me off. Husband, two out of three children and some very good friends keep me going. More importantly, it seems that I have to cut down on salt. Not good news but will do my best! Love Deb.

[Hidden in reply to Cobwebs]

Bless you. Keep those people close, you need them and they need you xx

[Health_matters1977 in reply to Cobwebs]

Hi Deb,

Yes my partner has been great. He knows I have liver problems and that they’re serious but nobody except the medical staff know it’s cirrhosis which I suppose is silly on my part I just can’t face it - guess it’s a stigma thing...I’m in the middle bracket apparently - one bad bout of ascites that was drained but no repeats since I gave up booze and cut down on salt. At my 3 month check up the consultants said everything else (spleen, kidneys etc) were all working perfectly and I’m lucky enough to have little pain. I’ve not had a biopsy yet but recently had an MRI which I’ve not had the results for yet. I do feel a bit out of my depth but definitely want to do all I can to give myself the best chance...so if I’ve been ill-advised I’ll happily give up cake, well maybe not happily but it did feel too good to be true!

It is hard keeping some things to yourself but I totally understand and respect why. Thanks for your message and hope you’re having a restful Sunday.

X

[Cobwebs in reply to Health_matters1977]

I sort of have played things down with my husband. I know that is silly but it is some sort of denial I suppose. I can't hide forever, can I? Nothing restful about Sundays here. Housework, washing, ironing. Oh, and having a teenager means being a regular taxi service! Take care.

Deb x

[Health_matters1977 in reply to Cobwebs]

Exactly the same as me, I guess I want to get my head round it all first but likewise, deep down know it'll have to come out at some stage. Not a very restful Sunday here either, I'm whacked - other half kept me awake most of the night snoring then we had to get up early as he'd kindly volunteered us to run an event for his cricket club, which I ended up doing most of! Now onto the chores no rest, eh?! I don't have a teenager though, just a loopy cat - but definitely the designated driver also! xx

[Cobwebs in reply to Health_matters1977]

Mine snores but I do have a spare room to escape to! Cat snores too. Yes, teenager was a bit unexpected at the age of 40 but he is an absolute treasure. My two older boys have flown the nest. 😔

[Plaingirl]

Hi,

You don't say if your liver is compensated or decompensated but if it's the latter then you should be on a fluid restriction.

I lost a lot of weight so was prescribed Ensure drinks to help me regain some quicker so it might be worth speaking to your dietitian.

I'm sorry for the awful time you must have had recently but now you have to concentrate on your own recovery.

Good luck xx

[Health_matters1977 in reply to Plaingirl]

Hi,

Thanks. Well, apparently I'm a bit of an enigma (my consultant's words!) as I had ascites and jaundice but my spleen was totally unaffected, platelets fine and kidneys normal...but I guess because of the ascites (one bad bout and nothing since) and the jaundice, I am still saying decompensated in my mind - anything more positive may be a bonus further down the line...

I've got an appointment with the dietitian on Wednesday so I'll ask her about Ensure. My dad was on Fortisips (he hated them!) and mum still has loads and loads of them at home, so I am going to ask the dietitian if they're any good

It has been a really rough time, I thought last year was bad but this one's taken the biscuit but this forum seems to be just what I needed. I have great support at home and from friends but to be honest, this is a whole new world for me and I am still learning about lots of things so it's just a bit easier to talk to people who know what it's all about - I still have to look up abbreviations and other words on people's threads on here and I have a very vested interest!!

I really appreciate your kind reply, hope I can offer the same to others once I know what I'm talking about a bit more - I can certainly talk about the daunting/isolation feelings when you first find out at the moment but longer-term etc will just come with time.

Take care xx

[Gemma68]

I don't understand you or cobwebs personally - why would you keep this from your partner/husband/significant other/etc??! How would you feel if they kept something this important from you??? When are you thinking of telling them, before or after you phone for an ambulance because you need medical attention? 🙄

[Kristian]

I think the best advice I can give is follow the advice of your dietician. Forget everything else anyone else tells you. They are the experts and know what they are talking about when it comes to liver disease and the diet you should be on with the various stages of it. Basically when you have cirrhosis and it gets to the stage where you are losing muscle mass then it means that your liver isn't able to adequately generate the energy your body requires through processing the food you eat because of the damaged caused. As a result, it takes that energy from the body's store, your muscles. The diet you have been told to follow is predominantly carbohydrate, and I would imagine protein too. If you are on that diet, don't worry too much about healthy eating, basically just eat anything. I had the same advice. Have a carbohydrate snack before you go to bed too. That is a good thing for you to do. (I thought i'd get moaned at for doing just that but it was the opposite, with end stage liver disease carbs before bed is a good thing). Also, when I had my transplant in Birmingham there was a notice behind every door on the liver unit. It said, "Have you had your bedtime snack?". On the list was the likes of Jaffa Cakes, Muffins, Mini Chedders and various biscuits. So, if its good enough for there its good enough for home.

The next bit of advice I would give is, don't be afraid to tell someone. You are going to need their support. You have liver disease, so what. Given what you describe above, how you got it and what people may think doesn't really matter any more. You have more pressing needs than that.

[Health_matters1977 in reply to Kristian]

Thanks Kristian, that's really useful. It's a lot to take on - and it feels very foreign to me to have snacks before bed but now I understand why, it's getting easier. My dietitian did say to me that the body needs carbs before bed because the liver needs an energy reserve to get through the night, so it's usually milky hot chocolate and a bowl of cereal for me now.

And yes, I am starting to get my head round it more now. I think because I found out SO soon after dad died that I was worried about upsetting my family further (dad was the glue that kept us all together and his passing was quite sudden) - as they had a lot of emotional stuff going on and we still do, I was just worried about worrying them - I'm the sort of person who worries if they don't have anything to worry about !! My partner knows the full extent (I just haven't used the words decompensated cirrhosis yet...) of what's going on as in the liver isn't functioning at all well, that I might in time need a transplant, that I had Hep A, that alcohol on top of undetected Hep A accelerated the liver damage...when I first got really sick, he would get up in the middle of the night to go to the emergency pharmacist and has been by my side in hospital when I've been admitted and is a huge support and I have some close friends who know the same. I do agree having someone close by to support me is vital, I am fast realising that I can't do this alone - there's too much going on.

So great advice and loads of thanks.

[Kristian in reply to Health_matters1977]

I had an inkling you were at that stage from what you described. You've received exactly the same dietry advice I got. It is good that you do have support already too. So those that really need to know, know. Good luck.

[sunnysmile in reply to Kristian]

From a fellow Manc - cracking post.

Take care all.

G.

[Smyally]

So sorry for the situation you find yourself in. Grieving is hard enough without finding yourself in bad health. Two years and half years ago I found out I had cirrhosis myself, my father in law died suddenly and best friend died all in the space of a couple of months. Like you I was in hospital with no privacy for grieving. I found that writing down my feelings and getting counselling really did help and I was able to talk through all my feelings and fears. Also listen to your dietitian as they are trained in liver disease nutrition and know you best. Yes eating I healthy diet is very important, but you mentioned the weight you had lost and their first concern is for you to get up to a weight and muscle tone that is healthy for you. I was told lots of protein to help my muscle and plenty of carbs for slow release energy to help work towards exercise goals. This is a great forum and a good place to share fears feelings and ask questions. Good luck x

[Health_matters1977 in reply to Smyally]

Thanks so much. And I am sorry to hear you had such a bad time also. I remember the phlebotomist coming to take my blood on the ward on dad's birthday and I was having a cry (couldn't keep it in any longer!) and she told me it was only a bit of blood she was taking not my right arm!! So yes, very little privacy...

I have set up a blog, and written my first one (and I'm a journalist/writer) so totally agree that writing is a great form of release and therapy, I'll just have to make sure I keep it up - amaze myself with how many times I've started writing a book, a new blog etc, and thrown the towel in - harder now with energy levels - but as it's such a major part of my life now, maybe it will be easier to stick to, fingers crossed.

Another kind person on here sent me a really useful leaflet about what to eat and when, so I have a bit of structure there - and this forum seems wonderful - so glad I found it!!

Take care and thanks again xx

[Hidden]

Dear Health_matters1977,

My deepest sympathies for your losses.

Several people have given you some good advice, I saw a therapist once who reminded me that a good therapist is often a person to tell your troubles to when you don't feel like telling them to others.

Best wishes,

Mary

[Health_matters1977]

Thanks Mary, I really appreciate it - and yes, sometimes it's easier to talk to therapists. I did see a really, really good one a few years ago but he moved away, he did say to me that he would continue to see me on Skype if I needed it, so maybe I will look him up.

Take care.

[Hidden]

Hi Health_matters1977

Sincere condolences for the loss of your loved ones.

Hopefully you will find our forum a supportive place to visit.

Have a look at the British Liver Trust website for supportive information about cirrhosis and living with liver disease. Here is the link to our publications;

britishlivertrust.org.uk/pu...

Warm wishes

Trust1

[Health_matters1977 in reply to Hidden]

Thank you, this forum is great. I'll most definitely take a look.