Acetes - back in 6 days?

[Njovu]

I had my first drain (its all going downhill in a matter of months now) last week - 9800cc of blood and water - total loss of 13kg from going in (2 nights 3 days) - great relief but in 6 days the pain is coming back and I have put on 5kg? Any similar experiences?

[moonbeam4]

There was a lady who used to post a couple of years back maybe, called D,kimberly. She had terrible problems with ascites they used to drain litres off her and then she had something called a Tipps shunt which stopped the build up if i remember right. I presume you are on the highest water tablets?. I hope they disscuss Tipps with you ( They put a shunt through the liver ) or come up with some solution, i know how miserable ascites is from other folks posts. x x x 😊

[Njovu in reply to moonbeam4]

Thank you so much - I gave up with the NHS as they said now I am out of the Child Pugh A (am B but was an A whilst they took their time - 7 months - to come up with a plan) and will only give me pain relief - I moved to Holland as my wife is Dutch and I am on her insurance - they say the same thing as NHS but they do the drains and help but will not treat me - so doubt it unless I get it done privately - will look it up thank you so much

[AyrshireK in reply to Njovu]

There is also a device called an Alfapump which allows you to drain fluid yourself avoiding the large build up. I can't remember your story but diuretic resistant ascites is a serious worsening of your condition. I take it you are following a salt free (as much as possible) diet.

Tipps would also reduce the portal hypertension but brings it's own issues of frequently leading to symptoms of Hepatic Encephalopathy.

WIshing you the best of luck, Katie xx

[Njovu in reply to AyrshireK]

Thank you so much Katie - yes low salt - I was fine until February but then the NHS did a liver biopsy and punctured my lung - it went downhill from there AFP was 450 now 10 000 (still not on any cancer drugs as not allowed) - my sodium was always mid range now suddenly its low - its the big drop in Albumin which I think is the problem but yes its worsening fast - I cannot get through the day / night without several oxycodon tablets ; in my drain as well here in the Netherlands I noticed a lot of blood in the first two bags then next day they could not remove the catheter as it got "stuck" excruciating pain trying to pull it - went into emergency intervention radio whatever and they found a clot on the end - eventually a big male nurse yanked it out - think something went wrong there as well

[moonbeam4 in reply to Njovu]

Njovu, If you were still under the NHS i would say for you to contact PALS ( patient advice and liason service ) they act as go betweens/trouble shooters between patients and Doctors etc and are fantastic at resolving issues quickly, and mainly in the patients favour!. The Hospitals or indeed local GP,s do not enjoy being questioned and questioned by outside agencies and tend to pull their socks up sharpish and get things sorted!. I don,t know your situation and but if you are still entitled to NHS treatment it may be worth having a chat or writing to them , they usually have an office at most Hospitals or the front desk will have their number. I don,t know your circumstances obviously but it sounds like you have not been treated well, in which case you ought to report it. Our lovely Kim, the lady i told you about was American and came here to be with her partner after her U.S doctors said there was nothing more they cauld do for her. She came to England and was promptly treated on the NHS even though not being a citizan at the time, eventually she required a liver transplant , which the U.S doctors had said was not possible. I,m actually rather worried about her as we have not heard from her in some time and she was very poorly Bless her heart, the last i knew she was off for transplant number two!. But certainly other people have had the Tipps shunt successfully, I hope you manage to get something sorted and don,t see why you should have to pay for your treatments, i would get someone like PALS to advicate for you. Best wishes, marie x xx😊

[Njovu in reply to moonbeam4]

Thank you will look it into it - I could of been on the liver list and treated but first had to "reside" in the UK for 6 months even though a full British citizen (born raised in Africa) - after that it was too late for milan criteria -they gave me email address for NHS complaints - it goes deeper that - I was being treated at the London Royal Free - first see one specialist a couple of times and then bang a new one and have to reinvent the wheel each time - then I got the 2nd in charge a really nice lady - she said that they had one trial place left for immunotherapy and would I like to reply - I jumped it at it and there and then she got the forms and did blood tests (of which they say were delayed 3 weeks by the "beast from the east" as blood had to go to the USA?) - blood tests came back positive saying that I was eligible for the trial - great had to do a biopsy though in which they take a piece of one of the tumours and another piece of an unaffected neutral piece - during it (two punctures as quack said she missed - that was the lung) I asked her two pieces she said no only one - I said please check as it was supposed to be two - nope - then a week later I got news that I was bumped off the trial as did not make the criteria - I brought up the above and was ignored and confronted by a very rude head of dept - the lovely 2nd in charge lady was on leave - seeing that the UK was going to cost me so much more in getting my animals there and housing double I gave up but still think I am eligible though?

[pamey1]

Hi - my husband had 14 litres drained over three days. His stomach reduced but I think some of it has already returned. Not sure if the drainage caused the issue but since he had it he has deteriorated very quickly and is now so fatigued that he cannot open his eyes and talk let alone walk - spending all day in bed. I was told that if it returned after 2 drainage sessions they would insert a permanent drain and the district nurses would come in to empty but it means you are at home.

[Njovu in reply to pamey1]

thank you - think its gas as down now and also weight - or could be the diuretic but not peeing much

[Elizableu]

Bless you. It’s soooo painful! I was getting daily drains for the first week or two then went to weekly and then after 3 months or so it didn’t come back. I had my treatment in France so language was an issue but I’m guessing that when the meds kick in the fluid slows down. Hope ur making progress, I know it’s hard to think but there really is life after it. God bless x

[Brett11]

The fluid does come back really fast. It did in my case. My weight was up and down by a few kilograms every day.

[Njovu in reply to Brett11]

thats what I have up 2kg gain and loss per day

[Paulwil]

The TIPS procedure was mentioned and the risks of HE.

I had the TIPS procedure. I had no further problems with portal hypertension or ascites. I was taking rifaxamin and lactulose and had no episodes of HE.

I hope you can find some assistance in sorting out the ascites problem.

Paul

[Njovu in reply to Paulwil]

thank you will mention it

[Geodunson58]

My husband had a TIPS procedure after having 10 liters of ascites drawn off about every 6 days for a couple of months and it did keep him from having ascites build back up. The TIPS caused right sided heart failure which they said is not as worrisome as left sided and it was because the TIPS shunts blood around the liver directly to the heart which causes extra pressure in the heart. The TIPS also shunts blood to the brain that is not filtered by the liver, which can cause hepatic encephalopathy. My husband took the Lactulose and did not get the HE. Thankfully, About 10 months after his TIPS, he received a transplant and it went amazingly well. He was only in the hospital for seven days, and is now 9 months post transplant and is doing great. Neither of us realized what effects the bad liver was having on him until he received his new liver and is doing so much better in so many ways.

I would definitely recommend the TIPS. Before the procedure, the ascites was so hard on him. His belly would swell up bigger than mine when I was ready to deliver my babies. He couldn't keep his balance, his feet and legs would swell, he would have trouble breathing, and couldn't sleep. He also got an an infection from having the fluid drained, and the drain sites would leak. He was so miserable! While the TIPS had it's issues, it was so much better than dealing with the ascites and its complications.

[Njovu]

Thank you so much and sorry for belated reply - I had a bad fall