Any experience with Lymphedema?

Archeron

Wondering if anyone here has any experience of dealing with an illness known as Lymphedema. My mum has developed this over the past while, and has recently been sent home from hospital (after 5 weeks) with the advice that there is nothing that can be done for her now.

This is causing her serious trouble, as the illness itself has made her legs so swollen, she is no longer able to move, or even get into bed by herself. We can lift her into bed, but the big problem is that when she is lying down, she has to pass water every 1/2 hour, and it then unable to get back into bed again. Unless someone is with her 24 hours a day, she is essentially stuck sitting on the side of her bed in pain. She is always tired, and we fear that she will fall asleep while sitting on the edge of the bed like this, and then fall. We would love to be with her 24/7 but I have to work, and my Dad is also disabled and cannot offer as much assistance as is neccesary.

As is usual with this illness (from what I can tell by googling it) she is starting to get sores on her affected limbs, the legs and these do not appear to be healing. She is on anti-biotics for another couple of days to fight infection, but between the open wounds on her heels (pressure sores from sitting in one place in hospital for 5 weeks solid, without ever being in a bed), the pressure wounds on the backs of her legs just under her seat, and now the, what looks like ulcerous sores on the cracked skin on her legs, we are worried that she is going to a very bad place with this. Just this morning, I lifted her into bed, and a flap of skin came off her heel causing her immense pain. We really dont know what to do, and I myself have no medical training.

I am sure the health service done what they could, but she actually seems to be worse now than before she went into hospital, as she has lost what minimal amount of movement she had left. We have discovered she is has type 2 diabetes as well, so her list of illnesses now includes the lymphedema, type 2 diabetes, severe rhumatoid arthritis in both legs and one arm, heart murmurs, a female problem involving the womb resting on her bladder causing toilet needs every 20-30 minutes, and being badly overweight through a lack of movement.
If anyone can share their own experience of this illness, and any tips on how we can best look after her, it would be appreciated. The odd thing is that the lymphedema is not a result of radiotherapy, or any cancer related issues, its just developed on its own, possible as a result of heart failure.
Its difficult to watch someone important to you be constantly in pain, uncomfortable, and unable to do anything about it. The health service essentially have indicated that theres no more for them to do, and this is presenting a massive worry for the whole family. I am in constant fear that my moving her may cause pain or damage, but we have choice but to do what we can for her in our own limited capacity. Should the hospital have given her exercise routines for this illness? Should her wounds be dressed? I am surprised that viscious looking sores like these are not, but the hosptital said medicated talc would sort it. (its not working by the looks of it).

Any suggestions, advice, pointers would be most welcome.

worksucks

Sorry to hear about your situation. I currently work in the health service and I would be very surprised if the wounds don't need dressings otherwise they'll get infected then your Mum wll need antibiotics, have to go back into hospital, possibly pick up an infection etc etc. Also in my experience to get anything from the Health Service you need to kick up a big fuss.
You and your mum are definitely entitled and need a physiotherapist to come out to your mum and help her do some light exercises and you should have an occupational Therapist come to your house and assess what modifcations are needed around the home to help you both and a district nurse should be coming around to dress the wounds a couple of times a week. Go to your GP, back to the hospital explain that you cannot cope wth this long term don't back down. It sounds like a very difficult situation for you and I hope you get somewhere with the Health Service and if they don't deliver contact your local TD it is worth a try!!

Archeron

Thanks Worksucks. We contacted the health board again, and they were supposed to have sent a nurse, but the request must have been lost. We've had a nurse come out to dress the wounds, and she said she'd be back a few times a week to track the progress. Cheers for that.

snorlax

yeah my advice would be to keep pestering them too, services aren't exactly evenly distributed. there should be a community health team in your area. an option would be to contact a social worker to see what services are in your area e.g respite, day care, home help/ pa schemes. there should also be a public health nurse who is in charge of situations such as yours. has your GP formally referred you onto any services?

by the way here is some information on pressure sores http://en.wikipedia.org/wiki/Bedsore and Lymphedema http://mayoclinic.com/health/lymphedema/DS00609