Answers please !

Help im new on here looking for answers that we are not getting from anywhere else.My dear friend had been diagnosed with 3rd stage liver disease.Her partner also had a stoke 6 weeks ago and although was mild is still struggling to get back to normal so I am trying to provide all the support to them I can.They are 52/54 years old.After my friend was rushed into hospital just before xmas vomiting blood and a huge swollen stomach she spent 6 days as an impatient where her excess fluid was drained and she was given her diagnosis.Since she was sent out she has had no treatment except 300mg of diuretics and folic acid.No one had given her any advice and her next appointment with her consultant is July.Since coming out her health has deteriorated her stomach is hard and extended and extremely uncomfortable.her waist size has gone form a size 14 to a size 22 and her legs have trebled in size. Her own doctor has just said eat what she wants, although I thought she had to follow a special salt free diet?.What on earth can I do to help ? No one seems to care that she is in pain and has no quality of life and I can see her going down hill before my eyes. Also her partner has been told she must go back to work fazed at first after her stroke in Feb but My friend is too ill to be left is there any care that she would be entitled to as they cannot afford to live if her partner does not go back to work .Im more than willing to help when I can but have to work myself. Can anyone tell me how long she should be left so swollen and uncomfortable and what on earth can I do to help them ?

11 Replies

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  • U need to ask immediately for a referral for a second opinion with a hepatologist preferably at a transplant unit

    Do u have a diagnosis for the liver disease

    Check with GP re getting sick certificate for work and then will get sick pay.after 6 months u then get referred for an interview re permanent ESA allowance

    Good luck

    Any more questions feel free to ask

  • Thanks so much for your reply.she was given a diagnosis of 3rd stage liver disease when in hospital but they still saying its under investigation .They say her kidneys are working well which is apparently unusual .

  • That sounds like the diuretics are not working. She should go to the gp and also discuss whether he would recommend b vitamins. A good relationship with gp is important. She may need to be drained again. Attendance allowance may be available. It's very hard I had to leave my boyfriend and to start with he was a bit confused and struggled to use the telephone. I encouraged friends to call in but it didn't help my efforts to feed him up. Do they know the cause? Can anything be done about that?

  • My partner was in the same situation a year ago,and this is what I can say and what I think should be done from my experience:

    1.She is swollen because diuretics are not working.She should follow salt free low fat diet (low fat to avoid liver pain).This swelling (ascites) is dangerous and should be treated asap by changing diuretics or by draining (in the hospital).

    2.Usually they prescribe beta blockers and do regular gastroscopy to avoid second bleeding.If they didn't prescribe the drugs and didn't make a gastroscopy appointment within a month,she could have another bleeding,and this is life threatening.What can be done is:

    call consultant and try to move the July appointment to the very nearest date.

    go to GP and push him to refer her to A&E

    go to A&E herself for the possible drain,change of diuretics,gastroscopy and/or beta blockers prescription.

  • Just forgot to mention: she should watch the color of her stool.If it's black,it means she has a bleeding and should go immediately to A&E.

  • Hi there. Ok, first, the distended stomach and legs sounds like the ascites is already back..that was fast. I had it and it caused a lot of pain.

    Let me be clear, I'm not a doctor, so you'll need to check. Normally it's every three months to be seen by a liver specialist, until it gets bad. She may need more fueroside or spironolactone.

    They do want you to eat..calories matter since liver patients tend to be quite thin near late stages, and yes, third stage is the final stage.

    Yes, a no salt diet, and not too much meat, red meat is important. The liver has a hard time with trying to get rid of all that. Sodium is bad. Just put it away..she needs three meals a day and two snacks or five small meals if her appetite is gone. Normally we get supplement drinks. I get the American version, ensure in strawberry..my favorite!

    I hate to ask..but your friend, is she a drinker? A heavy one?

    If she is and if she's still drinking she is just killing herself, and to be honest, doctors have no patience for this. Most of the liver transplants in the UK are due to alcoholism.

    I have 8.5 years sober now, but I did not get sick until I had three and a half years.

    I've already received one liver, and now have to get another, along. With a new kidney.

    If none of that applies, I'm sorry.

    Does she have any bleeding?

    You need to advocate for her. Where is your closest transplant center?do you know if she's eligible? Like over six months sober, or no liver cancer?

    It sounds like the ascites is back..I was getting drained every ten days at the end..but I would often get up to 21 liters drained at one time..so I really understand.

    Also, any blood in bowel, or vomiting blood can mean the varieties are bursting.

    All of this gets much more serious.

    I'm really shocked more is not being done...

    Are you sure she's telling you everything?

    If so, be an advocate..call her go, ask for an emergency referral to a consultant liver doctor.

    Good luck!

    Kimberly

  • Thanks so much for taking time to reply. Im trying to take a crash course in everything I can find out about this horrible disease.Yes my friend was a night time drinker but has not touched a drop for over a month now..We have phoned the doctors several times in the last couple of days to tell them how bad the swelling is but the receptionist just keeps saying the doctor is not in and phone in on monday and speak to her. My friend was told she had third stage liver disease but the cause is still under investigation and until they find out why they will not give her any treatment. She is still waiting for a gastroscopy (no one seems to know when!) It really seems as if they have written her off. Im sure that an animal wouldnt be left in the discomfort that she is suffering .

  • sandy 195 there be a mental component to this as well. when remembering what she is told by the doctor, go in with her and make a fuss it shows you care and another set of ears to remember what is said will help

  • If her ascites is as bad as you describe she needs to be at the hospital a.s.a.p. for draining. Her diuretics are not working and she should absolutely not be left in such pain and danger. The fluid can become infected and poison her whole system plus it will be squashing her internal organs. I imagine she already feels breathless.

    I would not be waiting until Monday and she certainly can not wait until July for further specialist follow up.

    She is showing classical symptoms of decompensated cirrhosis which would be stage 4 liver disease.

    It sounds awfully like her GP surgery is being judgemental about the cause of her liver ill health and that is very unprofessional. This lady needs help NOW. There is not much more medicine they will give someone with cirrhosis it is just a case of getting her stable and dealing with the other symptoms and side effects of her damaged liver. With the symptoms she has just now she is very, very poorly.

    Try and get her back to A&E.

    Katie

  • IN MY OPINION THE LIVER PATIENT NEEDS MEDICATION. HERES A ADEQUATE LIST THAT MEETS ANY DR APPROVAL. IS AS FOLLOWS: RIFAXIMIN LACTULOSE,REDUCES TOXIN GOING INTO BLOOD, LASIX WATER PILL FOR ACITIS AND EDEMA, PROTONIX ACID REFLUX AND HELPS REPAIR BURSTED OR ENLARGED VERISES,GABAPENTIN IF EDEMA CAUSE NERVE PAIN IN LEGS, PROPANOLOL LOWERS BLOOD PRESSURE TO REDUCE RISK OF BURSTING VERISES, THOSE ARE MAIN AND NECCESS. BUT THERE ARE OTHERS FOR SOME OTHER SYMPTOMS. AND FOR STROKE VICTIM. BE VERY PATIENT. GOOD LUCK

  • I think that there is an initial response of half heartedness from the medical profession to check whether someone will stop drinking. I don't think this is right but it is what appears to happen. Having said that... everyone is different but stopping drinking can, over several months, see an amazing recovery. In my experience it got worse before it got very much better. So hang in there. Someone to accompany her to appointments feels like it helps. .. for being taken seriously and to absorb the info given.

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