Hi my husband has lymphedema (since 2009) and frankly has been messed around so much that I tried to do my best to deal with things myself. I was buying dressing from the local pharmacy (kerramax £59.99 for a pack of 10) and online, as the District Nurses were beyond useless. My husband came out of hospital last year after sceptisemia, with a care plan from Wound Care, the District Nurses literally laughed in our faces and gave me Tubigrip and Zetuvit pads to dress very leaky legs. Then he ended up back in a month later when the Lymph spread up his chest. Still had leaking legs that I was dressing every day, none of the nurses would do it, spent two weeks without seeing the Tissue Viability Wound care lot, got fed up discharged himself and went home- then I tried dressing everything. Couldn't cope with it and he's got sores and then he tripped, dislocating his ankle and the wound on top tore through to the bone - sorry is gruesome-. So back into hospital a 3rd time, been here a week now, they wanted to take his leg off at the thigh but I think I convinced the Vacsular guy that we could get his skin better with treatment- it has always worked when it was supplied! But now been told the Tissue viability nurse/wound care is on holiday won't be back till monday and I am fuming! this is that same woman who ignored him last year, what is wrong with us, why haven't we been taken seriously?
I am madder than hell but I blame myself for not doing a better job of looking after him, he's only 38 and facing this. I'm having to dress his sores as the nurses just wanted to leave them saying 'oh well he's on antibiotics so there not going to get any worse!' gobsmaked I was! It's like they want him to lose his other leg too!
Oh so fed up, sorry to moan so, I just needed to talk to people who may understand a little how much the NHS can suck sometimes.
Don't come to South Tees Hospital if you're a lymphie- they don't know what to do with you, in my shocking experience.