My son has just been diagnosed with decompensated liver disease.

[cookiesmum]

Hi I'm the mother of a 50 year man. He was admitted to hospital on 10th Jan. We were no allowed to visit. They said he had covid. He was crippled with a bulge spinal disc. He had out of control diabetes and ulcerated feet hes been going to foot hospital for years. They didn't tell me the first week he was in a coma. He was sent home with no help. He is now on insulin. I only found out yesterday by reading a letter from consultant to gp saying he has decompensated liver er disease. Hes had a band put on varies in esophagus. He has ascites and portal hypertension. Mo one has told us anything. The letter says he has an opd app to have endoscopy but he has not received an appointment. Should have had it last week. I only know what I have read on line. I am so scared that he is going to die soon. He is very quiet and weak And is so forgetful. I don't know what they have told him. He li es alone and I asked if he could have home help the ward manager said he was being sent home as an independent man. He also has osteomyelitis in bones in feet so cannot walk easily. I feel as though he has just been kicked out with no support im I recovery of esophagus cancer so can't always be at his house to care for him. I've no idea where to turn to. His GPS are useless. Thanks for listening xxxx

[MissThing]

Hi cookiesmum,

What a lot of worry for you, when you have your own problems going on.

There are lots of very knowledgable people in here who will be able, I'm sure, to steer you in the right direction.

Sadly, I'm not one of them, as my own healthcare has left a lot to be desired, to put it mildly.

I phoned the liver trust helpline this week, and the nurse was so kind I could have cried, so I would suggest that you do that next week.

Hopefully in the meantime someone far more knowledgeable than me will advise you.

I just wanted to send you a friendly message so you know you're not alone in this x

[cookiesmum in reply to MissThing]

Thank you so much for you lovely reply. I will ring the help line. It is practically impossible to talk to his gp or hospital consultant. Just to talk to someone will be a great help. Thank you so much. Xxx

[kensimmons in reply to cookiesmum]

You should talk to a journalist. While everyone is working hard with Covid this is beyond incompetent. How can someone be let go home in this state and be termed "mobile"? Call the help line first thing tommorow for advice.

[cookiesmum in reply to kensimmons]

Thank you I will. He doesn't even have a liver consultant. He only has a diabetic foot consultant. Who when I asked what portal hypertension was just looked at me, turned away and spoke to a nurse. Part of me keeps thinking has he got this serious illness because the way he's been treated you'd think he just had a cold. Our local NHS is known as Horror Park it is that bad. We were not allowed to visit him due to covid. He was on for 6 weeks, I got the shock of my life when I saw him when he went home. And I only realised how poorly he was when I read his paper work. But thanks for pointing me yo the help line I will phone tomorrow. Xx

[pushthrough in reply to kensimmons]

I agree with Ken. He has way to much going on not to be seen and monitored. If that happened in the USA people would sue. Just saying.

[pushthrough]

Hello cookies. I’m 39 with compensated cirrhosis. The forgetfulness is likely from HE which they have medicine for and the same thing for portal hypertension. He needs to make lifestyle changes right away which requires a specific diet with under 2grams of salt a day. NO ALCOHOL ever again. The rest will need to come from a dietician because different people require different diets. The most important thing is he needs to see a liver specialist as soon as possible. It’s possible to become compensated which is a great thing. I still have portal hypertension though and prob will the rest of my life.

[cookiesmum in reply to pushthrough]

Hes never drank alcohol. He had hepatitis untreated for many years. And has also been on prescription pain drugs for many years. He has diabetes they said type two even though my grandfather my sister and my youngest son were all type 1. He is now being classed as type 1 8 tears later. He has ulcers on his feet that haven't healed in 6 years. He goes to foot clinic each week for 6 years. Imop his GPS have let him down badly. He was in hospital for 6 weeks and was crying to me on the phone that he was scared of the staff. When I spoke to the ward manager she said his bleed was due to his alcoholism. I told her he had never drank alcohol. She didn't believe me so I phone the endoscopy department and the clerk told me it was none alcoholic cirrhosis. He is terrified if he has to go back in. I don't think he has a liver specialist. I am going to make some phone calls on Monday. The dietitian sent an appointment to his house ,he was still an inpatient at the time. Thanks so much for your reply. Xx

[pushthrough in reply to cookiesmum]

Hello cookies. It’s hard to convince docs and nurses that it’s not from alcohol sometimes. They say mine is from alcohol even though lots of people drank way more than me. I just accept it because they tested me for autoimmune. I did drink often. I’m glad his is not from that but it sounds like he’s had a rough go at it! Try not to Google stuff it’s worse case scenario. There are countless people on here who were decompensated and got back to a compensated state. Treating the hep is obviously first and of course diet. Talk soon.

G.

[Maisy2020 in reply to cookiesmum]

Has your son had the treatment for hepatitis

[cookiesmum in reply to Maisy2020]

Yes but only about 2 years ago. Hed had it dormant for over 20 years. I didn't know he had it at that time.

[redpoint72]

hello I'm Chris,I was decompensated 3 years ago...... I wasn't appointed a hepatologist..... i have a good gastro consultant plus a good liver nurse,. i must admit,that i was a heavy drinker...until 3 years ago. but when i got rushed in with a big bleed last August.....the docs/consultants thought it was down to maybe I'd started drinking again.....of which it was not....it was portal hypertensive gastropathy,which coincides with liver cirrhosis....so stuck with that one!!. but I have to say 1 or 2 of the nurses were not struck with my liver cirrhosis diagnosis ,which I was upset by. but the majority of nurses were lovely....the ward matron was amazing such a loving,caring,lady....always a smile. your son should never feel scared of going into hospital . you really should discuss this with his gp. no one likes going into hospital,and he should feel reassured if that happens. my best wishes chris

[kensimmons in reply to redpoint72]

If you are decompensated why were you not appointed a hepatologist?

[AyrshireK in reply to kensimmons]

My hubby isn't under a hepatologist either - they are thinner on the ground than you'd imagine. Locally, hubby is under an ordinary gastroenterologist (with no qualified liver interest) and at Edinburgh his consultant there is also a gastroenterologist although she has a liver/biliary specialism.

In our health board area on West Coast of Scotland we have one liver nurse and that is the extent of liver specialism - two gastro consultants - one each at our two biggest hospitals. West Coast of Scotland - one of the highest drug/alcohol and 'fried mars bar' areas in UK and zero liver specialists. That's why we made sure hubby remained under the care of Edinburgh when he was taken off transplant list and we would fight tooth and nail to remain so.

Katie

[kensimmons in reply to AyrshireK]

I understand Katie. My statement was really more of an expression of anger than an actual question. Why doesn't the UK double the amount of Hepatologists? I know money is tight but it can't be that impossible, it seems people are dying because of this and this to me is no more different than if there were a lack of pediatricians.

[andy-g in reply to kensimmons]

I am shocked nothing has been. I had cirrhosis due to hepatitis which I was probably born with, but came to light in my 30's.I had varices which were banded and had a bad bleed. Portal vein thrombosis, severe acetis. I was with a fantastic hepatology dept and finally was. decompensated. I had a transplant and am now a new person. Your son needs to be with a hepatologist, don't take no for an answer, they are the experts. Good luck keep fighting.

[cookiesmum in reply to andy-g]

Thank you he had varices and had bleed, he had to have it banded. He had acetis too. He has so many other health problems I feel they've just given up on him. He also contracted CPE a hospital super bug which he will have for the rest of his life. He had open wounds on his feet due to diabetic neuropathy, they lost his special made shoes when they moved him from one to another. He was 3 days without until I phoned up and told them to get it sorted. I could go on and on about his treatment. He had sepsis and osteomyelitis in bones of feet yet he was sent home with no support. The more I writing this the more I realise I need answers. So glad you got your transplant. Have a wonderful life xx

[cookiesmum in reply to redpoint72]

Thank you for your reply. This is all new and has come as a shock. I've been with him today he seemed brighter in himself. He is phoning his gp tomorrow with a list of things to ask. Like who or where is his liver specialist and where or who is his dietitian. And where is his follow up scope he should have had 2 weeks ago. His treatment was disgusting but he won't let me complain in case he has to go back in at sometime.

[Readlots]

Hi Cookies Mum, I’m so sorry to hear all that you and Cookie are going through. When my Mum was in a similar condition with her liver (primary biliary cholangitis - an autoimmune condition) I had to push for a palliative care referral. Ask your GP specifically, community nurses, dietician - anyone and everyone really keep asking until you get some support. I also contacted the local hospice who were fantastic at getting all the right support in place. For some reason consultants don’t always recognise the importance of palliative care at an early stage to help people carry on living with these very serious conditions. He should have been given a care package on discharge. Is there anyone else who can support you with this? Another family member maybe? Sometimes you just have to ask, people don’t realise what you’re going through but want to help once they know.

[cookiesmum in reply to Readlots]

Thank you Readouts. We have managed to get his follow up scope sorted for next Tuesday, so hopefully they will then send him to see liver specialist . This is so new I'm doing all domestic and app and shopping ect. I really need to tell my grandson how poorly his dad is but keep putting it off. But he will have to be told I can't manage this all on my own as I'm not well myself its so hard its,like as though he's been just kicked out to get on with it. He is waiting for doctor to phone him. I'm not at his house but have left him a list of things to ask about. Its a of a world wind right now. But thanks for your advice, very helpful xx

[Readlots in reply to cookiesmum]

You’re welcome. Our hospice gives advice and support with telling family about the situation. They offered to help my brother with telling his kids about Mums illness. It’s not an easy conversation, but it’s also your sons decision and actually his conversation to have. Have you said to your son that the two of you need reinforcements and asked him to talk to his son? Hopefully when the doctor rings your son things will start to happen. Both of you need to make it clear to professionals that you can’t cope and need help. If they think he’s got help and that you’re coping they’ll leave you to it. What about your own GP and cancer consultant? Can they make referrals for support for you? Also McMillan are fantastic. They might be able to access some support for both of you. Let us know how he gets on.

[redpoint72]

hi kensimmons,if u r replying to me ...red point 72. over 3 years ago I wasn't. offered a hepatologist....just a gastro consultant she is good though. says things as they are. thank god I'm. no longer decompensated,and haven't been for a while

[cookiesmum in reply to redpoint72]

Hi hope you don't mind me asking , but you have said you are no longer decompensated. And that is fabulous. I wasn't aware it could change back to compensate. I'm new to even the word decompensated or compensate. This is all new to me. I'm just trying to make sense of it all. Thanks for listening

[kensimmons in reply to cookiesmum]

The term is "recompensating" and it means going from decompensated (bad shape) to compensated (not so bad).

You need a hepatologist and you need one NOW. The good thing is this will, or so it appears, lead to a hospital change and that is also what you really need. You will have to fight like heck for this unless you want your son to suffer. Start by calling the BLT tommorow first thing and they will tell you more.

Good luck! You can still fight this, a transplant might be a possibility but you need better care because of the feet so you need a completely different level of hospital and treatment.

[kensimmons]

Thanks redpoint, at least you have one of the good one's. But there clearly needs to be more hepatologists in the UK if this is happening.