Hi. I'm another newbie here supporting (or trying to) a partner

My partner is pretty poorly at the moment. He has ascites for which he is now on spiro after 2 failed attempts to put a drain in. He has decompensated cirrhosis and portal hypertension. They've sent him home from hospital but he can't sit up and is struggling with the pain.

[200987]

Is there a question you would like help with? I also have Cirrhosis with PH and have medically controlled as cites and small stage 1 varices.

[Hidden in reply to 200987]

Hi. Thanks for your reply. The trouble is I don't know what to ask. I don't know what I don't know, if you know what I mean... I just want to do the right thing by him. We're hoping the spiro tablets will kick in soon to ease his discomfort. I'm looking at a low salt diet for him, made more difficult as he is a fussy and faddy eater. He wouldn't eat some toast the other day because it had the wrong butter on it. His soup wasn't hot enough... Silly excuses not to eat... He is adamant he'll abstain from drinking now. I just hope it's not too late. I'm still trying to get more detail about his current health from doctors.

[200987 in reply to Hidden]

Hi there,

Hope this helps - there are two types of ascites. Responsive and refractory. In responsive ascites, generally it can be medically managed with drugs like Spironlactalone and Furesomide. Once these drugs take effect an individual with tense ascites can expect to lost between half and 1kg of water each day until weight normalises. Patients are kept on the drug where there is a risk of fluid re-accumulating. In 90 percent of cases this treatment works well although Spironlactalone can have side effects such as painful breast tissue in men and growth of breast tissue. However this is generally deemed a small price to pay if the ascites is resolving.

The other type - Refractory - does not respond to these drugs and patients need to be drained on a regular basis. A TIPS shunting procedure may also need to be used to by-pass the portal vein to keep ascites down but this has its own complications such as an increased risk of confusion and coma as the liver is no longer filtering toxins. Patients with refractory ascites are excellent candidates for liver transplant because in these patients pressures in the portal vein (the main vein from the digestive system to the liver) become very high and life threatening.

So the best thing is for the drugs to work and for Ascites to be managed in that way.

In my experience when I had tense ascites it wasn’t painful, just uncomfortable. This should be the case unless there is SBP (spontaneous bacterial peritonitis) where the ascitic fluid becomes infected. This is an emergency. If your husband has spent any time in hospital he would have been tapped and checked for this.

Hope this helps. Any further questions let me know.

Mike

[Hidden in reply to 200987]

Thanks Mike, it does help 😊I don't know which type he has. He has started to pass some water but not enough to ease it at all yet. He only has spiro not the furesomide. He won't be eligible for transplant as he has been drinking recently, hence the problem. I guess how he responds over the next couple of weeks will be critical to identifying if it's refractory..

Thanks again,

K

[200987 in reply to Hidden]

Ok Keep is informed. To give you some idea my weight went from 136kg will tense ascites to 100kg - my normal body weight using Spironlactalone and Fuseromide. It took around eight weeks and started slowly.

They will likely add Fuseromide if Spironlactalone is ineffective. They will also increase the dose until his kidneys bump. (Show signs of stress with increased creatinine in his blood).

Starting dose of Spironlactalone is generally 100 mg per day which they then supplement with 40mg Ferusomide. They can up this dose to around a maximum of 400mg of Spiro but they don’t do it lightly because of the renal effect.

Good luck and be patient. Hopefully the fluid will start to move

Mike

[Hidden in reply to 200987]

Thank you! I hope you continue to manage your health and stay well.

[200987 in reply to Hidden]

Thanks and all the best.

[AyrshireK]

I'd get him back into hospital, it's no good him being home not able to sit up or being in pain. They need to get his ascites under control and it is inhumane to leave him in agony.

Katie

[Hidden in reply to AyrshireK]

I've arranged a blood test for Monday. If his kidneys are OK they may increase the diuretics... I'm taking it a step at a time, just trying to get better informed.

[Lam1e in reply to Hidden]

So sorry it sounds like there is an awful lot going on!

I totally agree with Katie I’d get him to the ED, I appreciate that Hospital is not a great place to be at the moment but it doesn’t sound like his discharge was ‘safe’! Pre transplant have almost 12 months experience of living with Ascites and having to be drained at one point every 7 days and I know how awful it is and how bad the swelling can affect your body, your mobility and your quality of life! I appreciate every hospital and every patient is different, but did you ask why the drain didn’t work? I’m not medically qualified but I do know there are several ways they can do drains!

One of the reasons they will be monitoring his bloods very closely as the diuretics can occasionally cause kidney problems which is what happened with me, so the only alternative was the drains!

The slightly odd behaviour may be Hepatic Encephalopathy, which can be caused if your husband is badly constipated and instead of the toxins going out of the body, they go to the brain and you can have symptoms of memory loss and odd behaviour. There are 4 stages and they can prescribe medication to help with this! Read the information on it on the Trust website.

Look after yourself too🙏

Lesley

[Hidden in reply to Lam1e]

Thanks Lesley. He is on Thiamine for encephalopathy. The food issue has been going on for about 12 months with him and he was much worse through the first lockdown but was drinking then. They said there wasn't enough fluid for the drain to work but he looks like he's carrying twins! He'd rather be home I think. I appreciate all the advice and support. I hope you are feeling well and it's under control for you now.K

[Lam1e in reply to Hidden]

I think it varies from hospital to hospital on hoe much fluid they think there is to drain, and the risk of infection and in my case the diuretics just didn’t like my kidneys, so there really was no other option! I used to average 6/7 litres each time. Funny about the food thing as I used to wake up, usually at silly o’clock and be obsessed with something and get up and have to make it! One time it was tomato soup, which I made loads of for 3 days. Another time it was cauliflower cheese, then having to go to get chips for lunch and a trip to a certain fudge shop for a certain type of fudge, so something definitely plays with the mind.

Thanks to an amazing person who was an organ donor, and an amazing liver team both locally and at King’s in London I was given a transplant and a new chance at life🙏 So I am very well now.

I hope things get better for you both, but please do take him to the ED if he is struggling 🤗

[Hidden in reply to Lam1e]

Thank you. I'm so glad to hear that you are so well. I'm keeping a close eye on him and will get him to emergency if needs be.K x

[Richard-Allen]

Sadly I think this is becoming a sign of the times we are having to live in. Covid has hit everyone and hospitals are really struggling to cope. My local hospital at the moment has 38 patients on life support ventilators. A lot of none life-threatening conditions are being turned away. These include liver and cancer patients as beds just aren’t available.

Katie is right. Hospitals still have a duty of care.

I still don’t understand why Nightingale hospitals remain empty and the regional hospitals are left having to struggle.

In my opinion, we are at war with this virus. The Nightingale hospitals could be run by military medical staff, leaving the regional hospitals to do what they do best. Care for us all.

[Laura009 in reply to Richard-Allen]

It does make you wonder where all that money Captain Tom raised for the NHS is being spent!

[confused71 in reply to Richard-Allen]

totally agree with you --I have been saying this for ages