Need your help

[Paulbryant1963]

I would like to ask u all for Yr help if it is not too intrusive. I feel that my husband was not given the opportunity to go for an assessment when he first lost all the water retention and treated like a gineapig he was on 100m g of spirolactone a day and this causes the potassium levels to raise and could cause heart problems. He was on bumetenide and they stopped it as it was effecting his kidneys. They kept messing about trying things and I felt that they where not sure what to do. He went to 18 stone first of all and he was not given the chance to go for an assessment in Birmingham. I feel that if he had bn offered this things may have bn different. My question is can u let me know what meds u or Yr loved one was or is on and let me know yr thoughts as something is telling me to act on this. If you can help pin anyway I would be grateful. Thank you x

[J7836]

I lost my dad January 2017 and to be honest I had loads of questions about his treatment - they’ve never gone away I still wake up Through the night thinking what I’d this what if that. They did the same to my dad with the water tablets - he had been on the same one for years wi Hour problem but then they gave him spirocaltone and that just caused him loads of problems.

If you believe your husband didn’t get the right care speak up about it, I did go to see my dads consultant but I was just fobbed off.

Take care x

[Paulbryant1963 in reply to J7836]

I intend to. Thank you so much for sharing this I really appreciate it

[AJ120710]

Hiya I’m 27 female and have cirrhosis I suffered terribly with Ascites and was having to have between 10-12 litres drained every few weeks I was taking 300mg spironolactone and also ended up in hospital with hyperkalemia from too much potassium. They then put my spironolactone down to 200mg and added 20mg furosemide started to work straight away but was still retaining around 4-5 litres. I looked absolutely huge like I was 8 months pregnant as I’m only very thin. Now I’m on 200mg spironolactone and 40mg furosemide and it has worked brilliantly I have about 1-2 litres extra fluid now if that. I have been told I’m eligible to be on the list for a transplant when I have not drank alcohol for 6 months which will be in July and have put on 10 kg in weight and I’ve put on 7kg so far until then they said I won’t be fit enough to go for the tests in Birmingham. But also that I’ll be high up the list to get a transplant with being young and proving I won’t drink again. It’s all so confusing.

[Barnetaccounts]

Hi everybody’s body reacts differently to each different type of medication. I am on 50 mg of Spironolactane and 40 mg of Furosemide and they control any ascites wonderfully. The one thing they show concern about is my kidney function. I fancy (Do not know) but the moment my kidneys show any ill effects they would stop the medication immediately. I have had HCC for over 4 years and the only drain I’ve ever had was my lung following my aborted transplant. In assessing for the suitability for transplantation they could have decided that your Dad wasn’t strong enough and his kidney issues was another complication. In getting answers try to write down your questions beforehand and take down their answers to read afterwards so you aren’t trying to recall who said what. After my aborted transplant my wife kept a comprehensive note of everything they said and who said it. We have spent many an event my retracing the events of that night as they wanted to turn off life support. Well they were wrong and 18 months later I am still here. I am going into hospital this morning for my 11th embolisation again despite being told that this option was now “off the table”. I hope you get the answers you are looking for and can move on with the rest of your life.

Ray

[Paulbryant1963 in reply to Barnetaccounts]

Thanks Ray. Paul was my husband though. I wish you well and hope all goes well and thank you for Yr advice.