Merry Christmas everyone! We've had a lovely few days, just me, DH and DSD. We hunker down over Christmas and DH has everything in a plan so it works like clockwork.
To answer questions about the lymphoedema.
Are compression stockings the only treatment you will get?
Yes, though leg elevation is also recommended. I used to wear support stockings/ tights and at night I wore compression bandages but since the advent of this like Lycra, compression has been very good.
I have been prescribed socks for about two years but they are quite easy to get on, so my consultant says I've had the wrong ones. I need socks that are really difficult to put on. They usually put four blood pressure cuffs on all my limbs and test them, but that is not efficient. The mapping of the lymph system should make it easier to prescribe.
This is important because the fluid gathers under the skin and can make it fibrous over time.
Unfortunately the socks only come in two colours, black or nude/flesh, which doesn't match my very very pale skin colour, or indeed anyone not white. I can only get two pairs in one colour at a time and they last six months. So a lot of washing - I would prefer about six pairs and maybe nude/flesh for the summer as well as black.
It's worse in the summer because I don't want to wear black socks with a sun dress or on the beach but the lymphoedema is worse in hot and humid conditions.
Is it painful?
I spent three months in Florida in the early 1990s and it was very bad. My feet swelled up so much that the skin was very tight and hot. This happens in the UK when the weather is more than 30°C.
It gets very sore and I get a heat rash if it gets like that again. I prefer dry heat as they don't swell as much.
Stretched skin is more prone to cellulitis, a bacterial infection, and I've had that at least once. It gets more complicated because the lymph system finds it really hard to drain any infection.
It's possible my ankle infection was affected by my lymphoedema and my consultant said I should have been prescribed prophylactic antibiotics immediately after the fusion surgery. This may have stopped any infection from starting.
There is no cure and the only drainage is via massage but that needs a specialist not just a regular masseuse. It's not like varicose veins which can be operated on because the lymph system is so tiny.
I like to think I'm contributing to medical research for future sufferers.
What will they do if you do have kidney damage?
I don't know. Presumably I'll be given lifestyle advice to drink more water, avoid alcohol etc. I have naturally low blood pressure which is a good thing and will help. If I do have kidney damage then I could be offered dialysis and/or a kidney transplant but I think it's unlikely. My DM has untreated lymphoedema and doesn't seem to have any problems, so I might be OK.
No by mouth for three days and like a lot!
It was difficult the first time as I was nil by mouth from midnight and then was allowed to eat and drink at six. The second time was in October but the protocol has changed. Possibly different hospitals or different because six years have passed. I was allowed 50ml of water every hour during the day and so I didn’t have the same issues.
The best thing is I now have a diagnosis. I'm not lazy. I'm genuinely struggling with fluid retention in my legs and I may now get better support.