My husband has decompensated liver disease. Initially, his drain for ascites also resolved any mild swelling in legs and feet. Since February, the swelling has become worse and the drain doesn’t help. He cannot have diuretics, unfortunately, as his potassium increases to dangerously high levels. Elevating his legs and feet provides only brief respite - as soon as he stands the swelling returns. He has been troubled with agonising heel pain too.
he has Iron Overload which will soon be managed by venesection.
The specialist nurses don’t seem to have any solution for managing oedema in someone who can’t take diuretics. His disease in itself tends to limit movement and this swelling has made things worse. Life has become so very small for us. Does anyone have suggestions for easing this difficulty ?
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Fabrica10
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Sleeping with legs raised on a pillow definately helped keep my husband going. When they are above the heart, it encourages the fluid back out of the legs, which then has more chance of being urinated out.Take care
You can read all about ascites [which is the fluid build up in the tummy commmon in decompensated cirrhosis] and oedema [which is fluid build up in the lower half of the body] at the BLT page:- britishlivertrust.org.uk/wh...
Hello, thank you for your reply. I use the British Liver Trust website quite often. I have experience of using the helpline. The nurse was kind and reassuring. It helps to have someone to just listen at times - excellent service.
The iron overload won't be helping but venesection is not a magic cure and it takes a long time to start seeing an improvement. My husband is 6 months into haemochromotosis treatment and its going to take at least another 6 months of weekly treatment. His liver disease is well compensated, but he has other issues with pancreatitis and what is effectively type 3c diabetes due to the iron damage to his pancreas.
Legs raised whenever at rest will help. What other medication/treatment is he getting?
Thank you for your reply. My husband will only have venesection once a month at least to start. It is helpful to at least have an idea about the possible rate of improvement. He has a prophylactic antibiotic, some medication for Type 2 diabetes, also Candesartan, Bisoprolol.
He does elevate legs as often as possible. Improvement is only temporary of course but he can at least move a little better for a short while afterwards.
Hello and thank you for your reply. We haven’t tried compression socks and our specialist nurse hasn’t suggested them. I will ask during our next appointment.
Hi, my Mum got a referral to the Odema Nurse who fitted her for leg splints. They often work with women who get oedema after breast cancer. Might be worth asking your GP if there is a specialist oedema team local to you. Community nurses or hospices often know all the local services that can help.
hi so sorry to read this, I can imagine the pain he is in, its awfull poor thing, I don’t have any advice at all as I used duretics , but fingers crossed they can do something real soon
Hello and thank you for your reply. We are still searching for the ideal wedge pillow, at the moment we have a variety of other pillows forming a kind of mountain! A few people have suggested compression socks and will enquire about them.
Hello and thank you for your reply. I do massage his feet and legs quite often. His skin is very dry anyway so a massage serves two purposes. I don’t know how much it helps but it does seem soothing for him.
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