Advice needed...thanks:))

[thewayforward]

Hello everybody,

I am here because of my boyfriend.He has an advanced liver cirrhosis and has been in hospital last year,with intense variceal bleeding,ascites and encephalopathy .Prior to this he had a long history of drinking.He was in the hospital for two weeks,and managed to get better.Since then he had no alcohol,and 5-6 months has been on a pretty strict diet,restricting salt,fats and excess protein.Till now mainly what he eats is fruit,vegetables,grains,pulses,and cheese. (He hates cooked veg and grains,so I'm blending them with some fruits and apple juice to a sort of sweet shake) And one raw beetroot every day. (He can't bear eating meat or fish now for some reason).He started to salt his food a while ago,and also to eat some ice-cream,and sometimes a muffin or a croissant .The ascites seemed to be gone and he lost a lot of weight,however he still has a tummy.We've seen the doctor about 6 months ago and he said that there is no water retention present.

Unfortunately we don't have access to NHS,so we have to go to a private clinic,which we can afford only seldom.He takes beta-blocker,Omeprazole,multivitamins and vitamins b,and we stopped spironalactone a while ago,since ascites is gone.And I regularly measure his blood pressure to regulate beta blocker.

The main thing that worries me is that about once a month he has two-three days when he feels incredibly weak,has pain in the liver (that can be described as moderately strong),feels nauseous. He is able to recover from this attacks and then everything is normal again.And otherwise most of the time he feels OK.But then it comes back again in about 3-4 weeks.

So just wanted to ask if somebody had a similar experience,or maybe could give us some advice?

Could it be connected to him eating ice cream and cakes? (he has a sweet tooth,so he does it one ice cream and a piece of cake or muffin a day,but he stops when the attack is coming and holds up for some time).

Would be grateful for any advice.

Thank you and take care!

Irene

[janey_babs]

Sorry I am confused. Are you in the UK? If so, why don't you have access to nhs?

[dckimberly]

hi there..sounds like you are doing a lot..I was sober 3.5 years before I got sick, and ascites was what drove me into A&E in the US. I have to have drains regularly..and they give me ultrasounds to check on the fluid levels, although for me, it is obvious. I was on all the meds for it..but they just stopped working. I also have varacies, but thankfully, no bleeding yet.

Do they give him ultrasounds? Where are you that there is no NHS? the UK?

He needs some type of protein..I also rarely eat meat..its hard for the liver to digest it, especially red meat. Protein helps..my nutritionist also has me doing yoghurt..loss of appetite is completely normal, so is craving sodium. She said ice cream is good! Cheese might be harder?

But, it can take up to a full 24 months for the alcohol to completely leave all the cells of the body..5 months is NOT long, if he has an extensive drinking history. Also, because alcohol breaks down to a simple sugar..craving sweets is completely normal..Sweets are ok, just not in excess.

No pickles or olives, no adding salt..but again, craving sodium is normal, and you do need some..and protecting the kidneys is important too..The spleen and kidneys are trying to do the work the liver is not able to do..my spleen is twice the normal size.

Pain is normal, as is exhaustion The liver is one of the organs that controls energy and SOOO much more!!..so, the nutritionist tells me to eat something, anything every 90 minutes to 3 hours, since lack of energy and being extremely tired comes with the territory..I stopped eating..well, i just hated it..so much so they threatened me.. I have ZERO body fat, but my liver steals energy from my muscles..so that's not good either.

but your doctor CAN prescribe supplemental drinks and yogurts, etc.Those things have calories, protein, all the nutrients you need. All the info I am giving you is from the nutritionists and doctors at Cambridge, Addenbrookes Hospital (they specialize in the liver)

I hope it helps? pls feel free to message me privately here if you like..I also can make photocopies of the dietary restrictions and exceptions etc for you and email.

It's good how your doing the shakes.smoothie type things for fruits and veggies.

Having a large belly is completely normal with liver disease..I think you'll find many on us here do. My doctor said you will get extremely skinny, but have a belly. (I sometimes get up to 21 liters, or 50 pounds of fluid removed from my belly every 2 weeks..so, half the time I look pregnant with twins, the other half the month I'm too skinny..lol)

I know how bad the pain can be..and, it may get worse..depending on his illness.. so prepare for that, and the need for medications. Also, sleeping..there may be days he sleeps fr 18 hours..he wont be able to help it..Sometimes sleeping with soft pillows on either side of the tummy makes it easier to rest?

Again, I'm not a doctor and dont know all the answers..but, I know when it was early for me, getting info really helped.. but not off the net..from other people like me, or even better..the doctors and nurses.

I've gotten to the point where I need a wheelchair when I am out. but can walk around my home still..thankfully.

Sounds like you need more support, info, and to see specialists..at the clinic you go to..is there a Gastro specialist? or Liver?

anyhoo..hope thats not too much info and some of it helps?

thinking a good thought for you and your love!

Have they mentioned transplant yet? or is he not that ill?

cheering you on!!

[Hidden]

Hi Irene,

Your boyfriend is very lucky to have such a caring person to help him, I know it can be very difficult for both of you.

You don't say how old he is or what his 'MELD' score is.

I mention that because in many respects, apart from the alcohol, (the cause of my cirrhosis is Cryptogenic), his symptoms etc are similar to mine. I had my varices bleed in may this year

and before that, was unaware of my liver causing my problems. I am aged 60 with a MELD score of 10 and for a couple of weeks, although tired, l feel well enough but then for a couple of days, have pain in my back (just below my right shoulder blade and also my stomach area), bread often sets mine off but it can often appear without any known prompting.

Who told your boyfriend to resume his salt intake? I do hope that it's lo_salt as the liver still needs to process it. I know that you can't eliminate salt totally but I can't imagine it helps matters by adding more. I know it sounds odd but I use black pepper and lemon juice on the rare occasions I have chips or similar, the acid taste is similar to a salt taste.

Good luck to you both.

Mike

[thewayforward in reply to Hidden]

Hi Mike

Thank you so much for your reply!

My boyfriend is 51 years old,and I don't know what his MELD score is.But as I understand,this is something to do with the liver transplant?

Last time we saw a doctor,he said he didn't need a transplant.It was in September 2014.Since then he was able to stop taking diuretics and reduced his betablockers.

I think you are right,and it's the salt that sets this attacks.He starts putting salt in a food,and at first week or so everything is fine,and then he is in pain and nauseous and weak.And also last time it happened he did have bread right before the pain started,and he usually doesn't eat bread.The trick with lemon and pepper doesn't work on him unfortunately:)....

Wish you good luck and if by any case you want some information from me that could help you,please let me know.

thank you!