Physical symptoms and untreated ascites concerns

[cindyluhu]

My husband was diagnosed with alcoholic cirrhosis in September of last year. In 2022 he had an endoscopy that revealed portal hypertension gastropathy. He has lost a lot of weight in his neck, chest and arms and looks terrible gaunt, but in the last six months his stomach has ballooned with what I think is ascites--before that he had dropped 50 lbs. He also has some extreme pitting edema, and his feet and legs are twice the size they should be. He has not been seen by his gastroenterologist since January and is not scheduled until October 15th. Are there any effects that untreated ascites with result in? He has had a blood work up but refuses to let me know what the results are, so I am left worrying about the physical symptoms. Any thoughts would be helpful. Thanks for listening.

[AyrshireK]

A huge risk that the fluid will become infected which can then seriously knock out the liver altogether.

There is also a risk that the kidneys will 'join the party' and start to fail (hepatorenal syndrome).

If allowed to continue it will push his diaphragm upwards squashing his lungs and affect his breathing and can also lead to further appetite loss as his stomach may get squeezed.

Fluid build up is a red flag symptom and he needs to be seen a.s.a.p.

Such a pity he isn't being transparent with you so you can render the full support he needs.

Katie

[AyrshireK]

I note in your earlier post you say he's still drinking and not compliant with treatment. I hate to say it but unless he turns things around and very soon this is only going to end one way and it won't be pleasant.

Please take care of yourself in all this.

Katie

[cindyluhu in reply to AyrshireK]

He has stopped drinking, about three weeks now, mostly due to the fact that he drinks very little of anything. I will take the progress anyway I can. Thanks for your response.

[BritishLiverTrust8 Moderator British Liver Trust]

Dear cindyluhu

If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[Nerico]

I'd suggest going to the GP with him, explaining what's going on and ask to be seen ASAP.. He's got quite a few major symptoms there. If necessary, ask for a second opinion or contact gastroenterology directly, that length of wait isn't good enough.Good luck

[Dogfish12]

If I had fluid buildups like that I would be going to AE

Continued drinking if that is what is happening has to stop otherwise this situation will not end well.

[Millie09]

I'm so sorry to hear of hubby's issues. I remember my days of full on ascites, the pain in caused me whilst waiting for my drain to be done

I struggled to breathe ,walk , infact anything really, not sleeping due to the feeling of fullness, not eating, ascites if left can cause a lot of things,

Please take hubby to A&E ,he needs medical intervention,

If he is still drinking alcohol then this also needs to be stopped with help of either detox on a hospital ward environment or GP to help reduce slowly to stop unwanted withdrawal symptoms.

I do hope you can both get the help and support needed

Best wishes linda x

[Phoenix1705]

Hi,

Firstly, sorry to hear your husband is suffering like this, and you, as I imagine you will be having a rough time with all the worrying. From our experience and knowledge we have acquired along the way, the weight loss around the upper body is linked to cirrhosis. The liver draws muscle mass from this area because it isn’t working properly and therefore essential nutrition are not being absorbed, so the liver then draws protein from muscle mass to attempt to deal with malnourishment. I may not have explained this properly with medical accuracy, however, he really needs to see a dietician and they may prescribe him protein shakes to help with this. They will likely advise he needs to eat little and often, very low salt, low fat, low sugar and high protein.

Portal hypertension can be life threatening. Has your husband been diagnosed with any oesophageal varicies when they did the gastroscopy? Varicies can burst and this can be fatal.

In respect of ascities and oedema, I would definitely recommend a visit to A and E so they can drain his stomach. There is always a risk the fluid can become infected, or from what I have read on reputable sites, the fluid could enter the lungs

It is worrying his hospital appointments are so far apart, but you absolutely should not need to sit and wait for the appointments to come around. Does the hospital treating your husband have a specialist liver department? The hospital that treated my husband for many years did not have a specialist department and we did not have a positive experience of the care he received. When my husband was critically ill earlier this year with a GI bleed, the hospital we were under at the time transferred him to another local one for gastric banding to stop the bleeding. The reason for the transfer was due to there not being surgeons available through the night to operate at the one we were under and where we had gone through A and E. the hospital we were transferred to not only had surgeons through the night, who saved his life, but also have a liver department. The care he received there has been fantastic. We have since had his care transferred there and we now have a a specialist liver nurse we can contact at any time, and she has always been contactable. We only wish we had known this at the start, as it has made such a difference. That said, your husband sounds like he may be struggling in terms of his alcohol use. It is positive to hear he has been abstinent for three weeks, however the current symptoms you mentioned mean his liver is really struggling at the moment. Hopefully the hospital will be able to get this under control with the right dose of diuretics. It can sometimes take a bit of tweaking the dose to get it under control. However, as your hubby will already know, no amount of medication will help if he doesn’t stop drinking for good.

Sending you you lots of strength, I know the worry you are experiencing right now. Please look after yourself too x

[Kingbilly3]

hello, if you leave ascites the fluid can get infected he needs to go back to doctors, 🙏

[Breakfastbabe]

I am so sorry to hear this. This sounds like the treatment we were getting even from a specialist liver hospital. Not even face to face appointments but over the phone so they couldn't see how thin he was or the size of his tummy. When he finally got to see someone he was admitted immediately with Peritonitis. 5 days on antibiotics then he was drained. I know it is really really hard but as people here have said, this is a really dangerous situation and it needs resolving before complications set in. I always deferred to the medical professionals but I have had to get tough, both with them and hubby. The BLT nurses are brilliant so do phone them and they will talk you through what you need to ask, say and do. I hope you can get this resolved and take care of yourself .

[Oldbits]

Hi it's very hard to help someone when they are not open and give you all the information. I ve been there. Yes he has got himself in a pickle and needs intervention. Muscle wastage is part of cirrhosis along with the water retention. If he wont go to A&E or his gp and october is too far away. All I can suggest is make an appointment with his GP for yourself. Which is what I had to do. They won't discuss your partner with you without his permission (understandable) but what you can do is to say " I don't want information but i am going to give you information about .... " and then say how worried you are about them and give them details of the state they are in. It's put on his medical records and they have to act. You can also say this to his consultants. Good luck.

With my hubbie the gp contacted him and saw him...he didn't have time to object. It got things moving along.

Please please take care of yourself too...it's hard I know, when you're anxious about a partner.

[Benwillfred]

Definitely consult your liver specialist....they will be able to drain from the tummy area and if necessary from the chest area...I'm only petite but the most I've had drained is 6 litres from tummy and 4 litres from the chest area...the relief is amazing and I was OK but started swelling again and had a TIPS procedure 2 weeks ago !!! I feel brilliant...its been a real game changer!! Has check up this morning and brilliant results. Good luck I know exactly how you're feeling !!!

[2022minks]

Being his wife you should have no problem contacting his gastrologist, they have secretary's so they will be able to notify his consultant, they will always bring forward appointments if you gain symptoms as early intervention is key and could be a simple fix rather than an emergency event. Hope you get some help and he gets to be seen quickly x