Advice on odeama

[Diamondbabe]

Evening all.I am due to speak with our gp tomorrow regarding my husband.

His ankles and feet are swollen,red, hot and itching with open sores.I Have Sent them a picture.

Can anyone suggest what I should be asking our gp?

He was diagnosed with ARLD in May this year and is still drinking. He has been receiving treatment for athletes foot and I have been bathing and applying steroid and anti fungal cream for months now, and it is getting worse.I am concerned it could be odeama.

I think we need to understand how bad his liver has got now.

Thank you

[AyrshireK]

Have you seen the NHS guidance on oedema - there are some simple home tests there to check if his feel swelling is likely to be oedema. Sadly, these issues (symptoms of decompensated cirrhosis) arn't going to go away if he doesn't stop drinking. He is only likely to continue deteriorating.

nhs.uk/conditions/oedema/

Has he any signs of fluid on his tummy or groin area? Ascites and oedema often go hand in hand and can cause massive swelling of tummy, genitals etc.

Blood tests might show a reduction in his albumin levels if this is fluid retention due to cirrhosis.

Katie

[Diamondbabe in reply to AyrshireK]

Thank you.It does look like odeama and his face and tummy are swollen too.

Do you think I should ask about water tablets and a fibroscan?

His last bloods in May showed high GGT levels and the gp told him he needs to address his drinking and was very frank, telling him if he doesn't his liver will soon fail.

He has been referred to upper GI and had a body scan with contrast. This showed gall bladder sludge and thickening in his bowel.

He has had 2 colonoscopies where they removed 11 pre cancerous polyps. He has to go for another colonoscopy in Feb 23.

His appointment with the liver consultant is scheduled for March 23.

[AyrshireK in reply to Diamondbabe]

March next year is too long a wait. If this is ascites/oedema then he's showing decompensated symptoms. He needs physically assessing, possibly needs diuretics (or even draining if there is fluid in his tummy). He also needs it re-enforcing how dangerous his continued drinking is. Sadly, you can't expect medics to pull out all the stops if the patient isn't compliant.

[Diamondbabe in reply to AyrshireK]

That's what I think too.I need to be firm with the GP tomorrow.

I understand what you mean about not being compliant. He is very much in denial .

I have been fighting for years to help him, especially once he was diagnosed with korsakoff over 2 years ago.

I am not ready to give up on him yet. Although there are times when I wonder why I bother.

Do you think I should ask to expediate his liver appointment and suggest a face to face consultation with the gp?

[AyrshireK in reply to Diamondbabe]

I would try and get him seen in the flesh. If this fluid becomes infected he could end up needing urgent hospitalization.

[Diamondbabe in reply to AyrshireK]

Thank you for your side words.I will try tomorrow x

[Diamondbabe in reply to Diamondbabe]

Meant to say wise

[Rshc]

I am so sorry, you sound like you are dealing with a lot. My partner has ARLD, he had to come off diuretics due to low sodium earlier this year and ended up hospitalised due to oedema and ascites. Carrying a lot of extra fluid around can put additional strain on the body and during this period my partners bloods (which had previously been pretty stable) were all over the place and his heart was under some additional strain. Thankfully once his sodium increased he was able to go back onto diuretics but it took a week in hospital to sort everything out. Don't try and figure stuff out on your own and my general rule of thumb is anything that could be liver related we go to the consultant (honestly I make a right nuisance of myself I am sure I drive them bonkers) and anything non liver is the GP. If you can get hold of the consultant secretaries number I usually find that the best route to take. Good luck

[Diamondbabe in reply to Rshc]

I have got her number.I rang a couple of weeks ago to try and get an earlier

Appointment. I think she was more concerned about his polyps and wanted to deal with them first. I will ring her again this week to try and chase up. I was thinking she might refer him back to our gp.

It's like wading through chocolate sometimes, not knowing who is best to speak to.

Thank you

[Rshc in reply to Diamondbabe]

it is so hard. My partner has been listed for a transplant now and that’s made things a little easier as we have a transplant nurse who is our first point of contact but it can still be hard to get hold of someone particularly if you have something urgent. After my partners last hospitalisation for fluid I vowed that if he got that bad again (he was carrying litres and litres of fluid everywhere) I would just take him to A&E next time

[Diamondbabe in reply to Rshc]

I doubt my husband would even be considered for transplant due to him not co operating. He has been admitted twice in the last 12 mins with severe malnutrition and alcohol withdrawal symptoms. He signed himself out both times straight after being administered with pabrinex and librium. Straight back in the beer when he got home.It's like living on the edge every day, waiting for his next crash.

I hope your partner gets his transplant soon and recovers well

X

[Rshc in reply to Diamondbabe]

I am so sorry to hear what you are going through and hope someone is supporting you during this. Take care x

[lonmallin50]

if it hot and painful and sore to move his leg it might be cellulitis l had it with swollen legs and ankle i got de compensated liver

[Smokey001]

If your man can drink his beer. He can tend to his own oedema. If he cannot stop drinking he will have major issues. Try the Guinness approach. One beer, one glass of water I had peripheral oedema years ago. I solved the problem with no alcohol and copious quantities of water. Eventually your body acknowledges it needs to expell the excess liquid, so expect multiple toilet visits. It is a counterintuitive logic to what the GPs suggest, but it worked for me, my swelling and ascites cleared up within weeks. But really the alcohol must removed from the equation.

If hubby is snacking, obviously no salt, it retains fluid.

You should stopping being his nurse. He is a big boy now. If he is intent on self destruction then you cannot help. Spend more time away, go visit relatives and let your man know he needs to sort himself out, you are fed up with the exercise in futility.

[Sorrowful-1]

Hello. This is my first post and I would like to thank everyone for their helpful comments. Now, on the comment about swollen ankles, I would like to say what happened to me in case it might help someone else. I am a 69 year old woman who has happily drunk myself to de compensated ARLD. I was hardly ever what you would call drunk but it was constant, especially during difficult times.

Towards the end of the pandemic restrictions, my partner woke up in England, blind in one eye with a detached retina. I managed to get a flight from Spain where I live to look after him. While climbing the aircraft steps, I cut my foot rather badly. I couldn’t disinfect it until the next day and it got infected , red and swollen. After antibiotics were prescribed via a video consultation the swelling went down. Two months later, more swelling, flaking and itch. This time, Cellulitis was diagnosed. More antibiotics. On returning to Spain last November I saw a doctor who sent me for an X-ray and scan and said it was my weight. All other tests were ok but not perfect. I wasn’t happy and went to a private Dermatologist - twice and was told it was Venous insufficiency and prescribed cream. Wrong!

Not happy about this, I went to a Gastroenterologist as, although I had lost weight, my abdomen was hard and swollen and my ankles enormous and oozing. I had researched this online and got a shock as I’d never heard of Ascites. He did blood tests etc and dropped the bombshell - Decompensated cirrosis CPB9 with Ascites. Spironolactone prescribed which reduced the Ascites. I’m much more tired now but find it hard to sleep at night.

I am now seeing a Hepatologist who is pleased that I have dropped to CPB8 - meld 14 and a weight loss of about 6 stone. I’m sticking to the diet with the odd alcohol free wine and am enjoying the compliments on my new slimline appearance!

This site has helped me a lot as I see many people still surviving after a long time. I thought I only had months left. So the final comment is - if you feel something is wrong get it investigated until you’re happy with the answers. If only I had been diagnosed sooner…

Good luck all you brave people and sorry for rambling….

[Readlots]

I’m glad your persistence paid off and that your seeing the positive effects of your own hard work. Long May it continue 😊