water retention problem

l have severe HF and also my lungs are weak, l have really bad water retention in both feet they look like pregnant puffa fish, the retention has gone up my legs to my knees and is quite painful behind the knees, it is also up to my thighs, making my legs look really big, l have been on butaminde, and furosemide, both did not help, l am now on torasemide, but again they seem to be doing nothing, does anyone have a solution for getting rid of water retention, l do not have a lot of energy so have little motivation, it is really getting me down, l just need to see a bit of the retention going down and will feel happier, thanks for reading and helping if you can Lind111 xx

[Prada47]

Hello Could you contact your HF Nurse for advice ?? Do you keep a check on your weight ? Just so you can tell a medical professional how you have changed recently. I have read about people on IV meds to clear the fluid build up. I am sure you will be controlling your fluid intake so not much anyone can offer you need professional intervention.

Stay Safe and Well

[Hidden in reply to Prada47]

Thanks Prada yes l will have a word with my HF nurse and see what she suggests, one doctor said limit your fluid intake, then another one said make sure you drink water as it helps get rid of water retention, but your right it needs intervention, many thanks for replying, appreciated x

[Glynnw in reply to Prada47]

I was on an IV line for this, it worked really quickly .

[10gingercats]

My GP ignored something similar and I demanded a hospital referral.Long story short is that I ended up in AAU of local hospital where they diagnosed water around my heart and in my lungs and gave me furosimide and Spirolactone. The two meds , together did the trick and very quickly the water vanished. I lost more than half a stone over night . You may have to self refer to A and E and go that way for a fast diagnosis and response but do not let it continue.

[Hidden in reply to 10gingercats]

Thanks Gingercats, actually it was spirolactone that got me into hospital in the first place as l had a really bad reaction to it and it gave me a HA and l have already been on Furosimide to no avail, guess we are all different when it comes to taking pills, but really appreciate you getting back to me, and yes l will have a word with my HF nurse and see what she can do, many thanks x

[MelB51 in reply to Hidden]

Yes you need to check that the dosage of diuretic that you’re on is correct. I have a similar problem and the fluid around your heart etc will have a profound effect on you and your ability to do anything at all. Good luck!

[080311]

Morning,Before my surgery (Aortic valve replaced and bypass) I was in hospital for 7 weeks while I was on IV drip twice a day to get rid of the excess water. I lost 64lbs in weight! I looked like the Michelin X man!! I think you need to talk to your cardio nurse. I am now a bit paranoid about water retention, I have furosemide 40 mg daily and that now keeps everything ticking nicely.

I can appreciate how you feel, and you really need to speak to someone.

Hope you can get a handle on this,

Best wishes Pauline

[Jillymo]

I suffered a bout of heart failure a couple of years ago.

Since that episode I also suffer with the fluid retention in my abdomen, legs and thighs. I am on both the bumetanide and spirolactone - have also had furosemide in the past.

I find the bumetanide seems to shift the fluid in the morning but as the day goes on my middle increases in size. The spirolactone does nothing for me so my cardiologist advised I take another bumetanide late afternoon which seem's to have helped a little and I no longer resemle a mitchelin man.

I find the hot weather makes it worse and at these times try to raise my legs when I can. I avoid salt in my diet and have just started taking black seed oil capsules because I read it helps.

I havn't tried the torasemide, is it helping ? If you feel the swelling is getting worse you need to seek professional advice.

Best wishes are being sent your way.

[Hidden in reply to Jillymo]

Thanks for the message, the water pills l have tried are not very good at shifting the water retention, have spoken to my cardio nurse and she said she will phone me in a week or two, the Torasemide seems to clear some of the water but my feet calf's and thighs need a bit of help, may try the black seed oil capsules, along with melon which is supposed to help, many thanks lind111

[Jillymo in reply to Hidden]

Black seed all has a nast lingering after taste I would stick with the meloncapsules if I were you.

[Hidden in reply to Jillymo]

Hi Jillymo,thanks for the message, you would have thought that when mankind can send a rocket to the moon with someone inside and bring them back to earth, then mankind would have found a way for us all to get rid of water retention and not just supply us with diuretics, this has been going on for years, and they do not seem to be any further forward, mind you a doctor that has recently come back from Australia has a new machine called a flexi flow which removes the water from your blood and returns the water to your body afterwards, the doctor is in the Heart hospital in London, says it is a bit like a dialyses machine but only removes water not waste, lets hope we hear more about it from the BHF, its about time something new came along, regards lind111

[Jillymo in reply to Hidden]

This machine sounds promising to say the least but it would be so much easier to fit a tap. Carrying the water around all day is like carrying a couple of heavy suitcases around all day and leaves me feeling so exhausted. I shall look this new method up with great interest.

I do hope you find somthing to help you.

[Hidden in reply to Jillymo]

Good Morning Jillymo, The machine is called Aquadex Flex Flow a woman had 2 gallons of water pumped off of her, she was taking 4 water tablets a day which were not working, lol, so she went to The heart hospital which is part of the university college London hospital and saw a Dr Martin Thomas who took her in and connected her up, no sedation needed except a local where the tube is inserted, and pumped the water off of her, she had to stay in hospital maybe 3 days, but during that time the kidneys got a rest from the water pills so they re balanced and now she is just on one a day, her name is Nelcy Wright and she has heart failure, this machine has been available on the NHS since last September 2020, l mentioned it to my CN who replied we will not go down that route yet as we have a lot of other Diuretics we can try first, 36 years ago my mother was in Westminster hospital with heart failure and water retention they could not get the water off then, and 36 years later they still cannot, surely it is worth trying a new method. there are three hospital that have the machine, what part of the country do you live in, l am in Kent. l am totally fed up with these swollen ankles etc., and can understand you getting exhausted, because everything is an effort. meanwhile have a nice day regards lind111 x

[Jillymo in reply to Hidden]

Hi lind111,

Thanks for the info.

I have always suffered with water retention since in my teen's and would easily go up a dress size. I would have to carry a nappy pin with me because my jeans would get tight and I would have to undo them hence the pin.

Since suffering the heart failure and having an enlarged Aorta the fluid is in my tissue all around my middle. On very hot days my thighs swell and ankles - oh what joy.

I attend the United London College Hospital but this machine has never been mentioned. I take 3 diuretics - 2 in the morn and one mid afternoon. I am up and down all night like a yo yo.

If I remember you said this machine removes the water from the blood which would be no good to me because I have Antiphospholipid Syndrome - sticky clooting blood.

[Hidden in reply to Jillymo]

Morning Jillymo, yes l also wondered about the blood clotting as l take blood thinners, but my water retention was so bad l took myself to AandE and they took me in and said l had 12 liters of water retention to get rid of that is almost 2.2 gallons and they kept me in a week and got some of it off but l still have quite a lot so am checking out the machine what l did notice was that l was losing my marbles and mobility whilst in the ward it was mostly old people some dementia Alzheimer and they were talking all day and night very sad, but when l could not remember my NI.no. which is drilled into you from day one, it was time to get out of there, plus my mobility was almost nil, nhs and staff are so good and we are lucky to have it and them, we would be lost without them, but l can see how easy it is to end up with dementia or Alzheimer it just creeps on without you realizing it and with the mobility issue, so you do have to be on your guard mind wise, l am now taking 40mg Flosumide a day, l had IV in hospital but this is now orally, you take quite a few water pills, no doubt they will up my dose, at least with the cooler weather your ankles and thighs may not be so bad, anyway l wish you well, take care regards Lind111

[Jillymo in reply to Hidden]

I would expect if you had that amount of fluid drained off you you must have also had fluid around your brain. Had that have been the case it would explain the dementia symptoms. I can remember going to St Thomas Hospital in Londo and a Dr saying to me we must get this fluid away from your brain.

I tried to look up the machine you spoke of but couldn't find it . What hospital has it and what is the proper name for it ? My water retention is caused by my Aps >sticky blood< causing problems with my heart. Thinking back to my younger years I was always sensitive to salt and would blow up like a balloon if put on a sayline drip. I can remember after an operation bursting the stitches which caused a panic so they removed the sayline.

Try and keep yourself sane and dont loose anymore marbles. 😘

[Breesha]

Water intake is a vital part of water retention, so all fluid should be measured, I can have 1 and 3/4 litres a day and that’s it , with one bumetinide , I lost nearly four stone in fluid , a litre so so had to be drained off my chest , I found that ice cubes with a little water was good as they melted I had a sip or two. , It’s not difficult to measure fluid intake and output. . Good luck ..I also had an allergic reaction to spionalactone

[Hidden in reply to Breesha]

Hi Breesha, yes that Spionalactone was pretty bad for me, it made my feet swell up more, made both my breast get bigger with the nipples and flora going really red and sore that you could not touch them, and a pain across my chest which when l got to hospital they said was a HA the pill and l had only taken one did all that to me, so now l am extra careful what pill are given to me, thanks for your message, hope your reaction to Spionalactone was not too bad.

[FeetheBookworm]

When I was first diagnosed with HF I was on 2 fluid tablets a day, one of which was 25mg Spirolactone which I am on to this day, and Furosemide which I had stopped after about 8 wks when I started getting dizzy spells as if I had an ear infection. I had to measure my fluid intake - 1 1/2 litres a day only. No salt in cooking or added to food at all. I was allowed to introduce salt back in about 2 months later when my levels got very low. I use salt in cooking but add it v sparingly to my food as I’m not overly fond of the taste of it. I lost over a stone initially after diagnosis and try to stick to the fluid intake recommendation.

Hope you get it under control soon.

Fiona

[Hidden in reply to FeetheBookworm]

Thanks for the message Fiona, l will stick to the fluid intake, many thanks lind111