Help

[Naomi425]

Partner is an alcohol and has de compensated liver disease, (hepatology diagnoses him in July : still no follow up appointment) ascites and now I think he has varices. NHS being hopeless and he won’t complain. He is In agony (on codeine) spitting up blood and I don’t know what to do . (And to cap it off the local alcohol service says he should reduce his alcohol intake by5% a week. He drinks a bottle of wine a day and maybe the equivalent of 6 G&Ts. ). I am at my wits end as I cannot complain to the nhs as he doesn’t want me to but I can see him dying in front of me

[Boone81]

He needs a medically assisted detox immediately it’s not safe to wean himself off at this point contact his doctor for help.

Take care

Boone

[Naomi425 in reply to Boone81]

I agree but I have no idea how to get him to persuade the gp or the alcohol service to do this

[Boone81 in reply to Naomi425]

If his doctor doesn’t agree to a medical assistance than find a new doctor or take him to an emergency room at your local hospital they will be able to help he must realize that this is his last chance he must quit drinking. I sympathize with you both I know it’s not easy to quit but it must be done.

Good luck

Boone

[Naomi425 in reply to Boone81]

He knows he has to stop and he knows he needs medical supervision to do it . He went to a&e during lockdown about his ascites and pain and got sent home. The best we have got so far is some diuretics that are reducing his ascites a bit

[Boone81 in reply to Naomi425]

I’m sorry to hear that it truly is not right I’m in Canada so I guess it must be different here my experience of going to the emergency room was much different once I explained I needed help to quit drinking they took great care of me.

Boone

[Laura009 in reply to Boone81]

Hi Boone .

Our NHS does take amazing care of alcohol dependants with liver conditions as long as they can be strong enough to admit they are addicted and want help to quit. The councelling will get to the bottom of their addiction and the medics will work round the clock to do everything in their power to save their lives.

Best wishes

Laura ( love Canada 🇨🇦)

[Laura009]

Hi Naomi.

Has your partner actually admitted to his GP that he is alcohol dependant and needs and wants help to give up? Until he does, the NHS are almost powerless other than treating the symtoms of his disease. However if you/he call 111 or even 999 and he himself admits this to them and that he has cirrhosis, it should get the wheels in motion for a detox and councelling to get him off the booze before it does kill him.

I know, it's a rough ride, not made any easier by covid. You will need to be incredibly strong and don't take no for an answer from him.

Please let us know how you get on.

Best wishes

Laura

[Tsuology]

Hi Naomi. Find out which hepatology consultant he is under at the hospital and call the consultants secretary in the NHS. You’ll get the name from switchboard and you might be passed around a bit but should be able to track her down. Tell her what you have written above, in particular stress the blood being coughed up....you might want to exaggerate a bit to get her attention but it depends how comfortable you feel doing that. Say you need to speak with the consultant urgently. Unless he is sick or on leave there is no reason that shouldn’t be the same day. Keep calling, be a nuisance until you get that conversation

The nhs is under such stress at the moment that it is primarily ( and rightly) urgent cases that are being seen. If you sit back and wait you’ll have a long wait for sure

Best of luck.

[Naomi425]

Hi all, thanks for all your comments . Bit of an update and still some frustration: my partner agreed we should ring 999 as he was bleeding so much from his mouth. A&E were pretty good with the immediate symptoms and got to the bottom of some of his medical issues - low platelet count and low sodium levels. Sadly whilst in A&E partner didn’t do his normal screaming In agony. I complained to doctor about alcohol service only advising harm reduction but he was unwilling to do anything.

Anyway partner has appointment with ambulatory care on Wednesday so will see what happens then

[Laura009 in reply to Naomi425]

They have to be very careful when giving advice re giving up the alcohol. For many adicts, stopping immediately has no ill effects, for others it can be extremely dangerous and it has to be a slow withdrawal process. So docs will always err on the side of caution and suggest a gradual reduction. I promise they are not acting irresponsibly.

Lx

[KulG20]

Hi Naomi

I was at this stage last year and my wife dragged me to A+E on the Friday night before o had a life threatening bleed (which came 5 weeks later)

If I hadn’t gone to A+E to establish some stability o would not have survived the later big bleed. At that moment I spent 3 weeks on drips and drainage of fluids etc so you have to do it now don’t wait for a referral

[KulG20]

Agree with Laura

NHS was amazing that night and for the following weeks

Never ever asked before but when I did they were there for me

[joeburger]

Hi Naomi425

I was going to an addiction counselling place and they also tried to get me to reduce my alcohol intake slowly because of the dangers of stopping suddenly. I found it incredibly hard I was so dependant on alcohol it was my first drink of the day. I was admitted to hospital after so many blackouts and waking up one day unable to walk. I was detoxed and after a long assessment period was accepted for a transplant.

I wish after hearing all the difficulties others are having with their doctors and consultants that I could share mine with you all, they are fantastic. I am on my way to hospital today for more blood tests as my liver is still not stable after transplant 17 months post transplant.

He must get the help he so needs either through his gp or a&e admission.

Wishing you both all the best.

Lesley

[Bs1524]

Hi Naomi I am so sorry you are going through this it can feel very lonely but there is so much support here I know I could not have managed without all the lovely people on this forum.

I took my husband to his GP and said if you don’t do something he is going to die and that was when he was sent to hospital and they started detox as well as diagnostic tests and we discovered he wasn’t physically dependent on alcohol but obviously mentally he was using it to numb everything.

We are now going through assessment to get on the transplant list hopefully next month we will be asked to spend the day at Cambridge to complete the rest of the assessment and meet the rest of the team.

You do have fight to get noticed but once under the right people they are marvellous. Good luck x

[Roy1955]

Google CGL or Addaction for your local area.

You can self refer to them and be seen quickly.

They have Drs and nurses that can prescribe meds and supervise an at home detox.

They probably saved my life.

CGL = Change Grow Live.

[Naomi425]

Thanks Roy

He is with CGL. As described before they to date aren’t willing to do a home detox

Anyway more of an update.

He was meant to have a referral to ambulatory care tomorrow. This didn’t happen (why are the NHS systems so rubbish?)

In the process of me talking to ambu care they panicked and realised his low sodium needed sorting

Partner got call from hepatology who told him to come off his diuretics . He is now going for bloods next Monday and a face to face on Tuesday (it must be bad)

Partner is in agony and really worried he will be in more agony without the diuretics.

He’s also going madder and madder because of the low sodium. I have given him low sodium drink to try to help (I know he shouldn’t have a lot but he really is going crazy)

Good news is the bleeding has stopped

I reckon he’ll be back in a&e on Thursday because of pain and madness but that’s the NHS’ problem not ours

[Laura009]

Call 999 NOWhe needs to be in hospital and treated with lactulose and or refaxamin to treat the HE .... hepatic encephalopathy which is the mad behaviour he is displaying. It is essential he is given this to get the toxins out of his blood stream which is now affecting his brain which is incredibly dangerous.

[SoberDrunk1]

Have you ever reached up to AA hot-line? Perhaps you could have AA members visit your husband and share their stories and how they recovered from this hopeless state of mind and body. You can also, slip the book Alcoholics Anonymous next to his bed or somewhere so he can read and draw his own conclusion.