Salt...got to love salt!

[Chelle_]

So, I have been away on a little break for about 3 weeks and notices whilst I was away that it doesn't seem to matter about being on diuretics I still seem to balloon up.

I avoid salt where I can and always chose the low salt options if I am out to dinner normally resulting in chicken and veg or a salad no dressing for food. The problem I seem to be having is I am always bigger as the days go one, fingers and feet, legs and hands very full of fluid and trousers are normally undone by the time I get in my car to drive home.

Did anyone else notice (I know none of you are able to give me medical advice and I am also aware that we are all very different) that as the time went on with your liver disease that your medication started to stop working? I know my spleen is around 25cm and I tend to feel sick most days or suffer with a headache and if I am really lucky I get both....

I just wondered if any of you lovely lot started to struggle with your general health...

Hope your all well or doing a good job of pretending to be!!

[Millie09]

Hi chelle, I too have been on a break myself due to health problems. Back in 2008 when first diagnosed with cirrhosis and I had a very very large tummy, feet , ankles even up to my knees I was in agony. I was drained 3 times over a 6 week period on hospital. On discharge told low salt diet plus I was seeing a nutritionist. Well after 4 weeks at home I was as big as ever even on 200mg of spiranolacone that was increased from 100mg .did nothing. Was admitted to hospital again where they carried on with the spironalactone and added 100mg of fruosemide to it ...nope ! Did not work whatsoever so was drained yet again and kept on 200mg of spiranolacone for quite some time before being reduced then stopping 2 yrs later. I found with ascites with me it did take some time for it to stop due to the damage done to the liver. Has your consultant said anything to you? Diuretics are good only if they work but I had to be monitored to check kidney function x

[Chelle_ in reply to Millie09]

My kidney function is fine, I think anyway. I have been on the sprio (200mg) and the fues (40/80mg depending on which day it is) for almost 4 years. Never have I had a break, they tried to take me off of all of them but within 2/3 days I was like the Michelin man again! I've only ever had a little amount of fluid drained and that was during ultrasounds. The fluid for me seems to spread and not stay just in my stomach!

I am away to see my Haematologist later, I know he has a little knowledge of liver disease, but he will do until I see my Hepotlolgist.

Hope your ok.

[Millie09 in reply to Chelle_]

Well that's good news that your kidney function is good .

That's a long time to be on diuretics but then we are all different. My ascites didn't spread around it just stuck out like a woman with triplets and my feet were bad that I could hardly walk.

Glad your off to see the hepetologist later hun, hope he an shed some light on the matter. I'm ok thank you for asking, my bones are very Thin so now on 3 types of vitamin D and calcium 😩...oh the joys lol .. Take care and hope you get some answers x

[Porphyrogennetos in reply to Chelle_]

"My kidney function is fine, I think anyway."

Have you had it checked?

Best,

P.

[Chelle_ in reply to Porphyrogennetos]

I have it checked every month. I'm in the transplant list so it's a requirement of there's. X

[AyrshireK]

As I understand it ascites can become 'diuretic resistant' - Diuretic Resitant Ascites is one criteria which moves people further up the transplant list. Certainly is mentioned as such on Scottish Liver Transplant Unit pages. Definitely worth pointing out to your TP team at next clinic appointment.

All the best, Katie

[Chelle_ in reply to AyrshireK]

No that's worth knowing. Katie you are a font of knowledge! I hope you are ok. Chelle x

[RodeoJoe]

Definitely. At first the diuretics lost me 20 litres of fluid. But then it started coming back after a few months. I believe this is common.

[Chelle_ in reply to RodeoJoe]

Thank you for that! I shall definitely speak to my Team! How are you? How's the leg? x

[RodeoJoe in reply to Chelle_]

The leg is absolutely fine thanks Chelle. I'm back on my bike and trying to get fit for a sponsored ride I've got in September dorset-bike-ride.co.uk/

I'm doing the 50 miles, but I'm not sure if you know the area but there's loads of hills. I might make another post about this nearer the time because I'm raising money for Kings College uk.virginmoneygiving.com/fu...

Good luck with the diuretics, sometimes they can tweak them about a bit. Besides the ascites how are you doing? Are you still working?

[Chelle_ in reply to RodeoJoe]

Yes still works and was told by my Heamotologist that maybe I should stop. They were very kind in offering up support for if I need to stop working but for the time being I am doing ok. Besides the ascites I am ok, I have some horrific headaches and they are questioning sending me for a CT scan to check for bleeding on the brain but I've told them I think that's unnecessary, so they have told me to come back if I have double vision.

I know Dorest quite well actually. My other half and I were based in Hamworthy for some years. Beautiful place. You will have a lovely time out of the bike. Just take it easy - better to be the tortoise than the hare!

x

[Millie09]

Now I didn't know that About diuretic resistant after a while.. is that the same for everyone I wonder? Not had any ascites in 3 yrs which was very slight compared to 2008 .not on diuretics either.. interesting

[donnaejm]

Cool-Aid is a great diuretic! Large doses of vitamin c will make you pee it all out better than any drug!!!

[donnaejm]

Also a large dose of Phillips Milk of Magnesia at night will make a lot of fluid come out. But you have to take an extra large dose and wear protective underpants to bed! Also Epsom Salts on an empty stomach in an extra large dose early in the morning will empty not only your bowels but all your fluids! But you will have to spend the whole day in the bathroom. Large amounts of vitamin C will also make you pee it all out. Kool-Aid is an excellent help!

[Guyb in reply to donnaejm]

That's good to know the old remedys the best

[donnaejm]

You said it!!! If there's a way that's safe and doesn't include drugs I'm all for it!!!!

[donnaejm]

I love salt. But my biggest problem with fluid retention is my absolute love of any and all breads!!!