Lymphodema ma ma
Donation protected
I HAVE HAD THE CONDITION FOR 14 YEARS for the first 10 years, I managed to care for my leg and continue to work. Then I had a stroke and 3 years ago 2 more strokes, from which I have never fully recovered ( so far ). Last October 2017 I had bandaging for the first time and in just doing that lost 5 1/2 litres of fluid below knee on my right leg. I had to move from there as I was not in the catchment area for the NHS trust. My first appointment was in January with my local team, but no bandaging and none yet as the leg increased in size so much that fluid poured from my skin in both legs (end of May 2018). My leg has to stop leaking as the dressings are so thick they cannot be bandaged over. The only way of downsizing my leg is to buy a made to measure wrap which will temporarily act as a compression bandage - until they can use the proper bandages. I need more than one - changed regularly to start with (in size) and a lot smaller size when the leg goes down as far as possible.
I would also benefit from a machine which will move the lymph around my body to empty into normal circulation. Now these machines are made to standard sizes not my size - lol.
I need this to happen asap or my life is at risk - I have a CPAP machine at night as the fluid is too much for my airways to cope with - i'm sure the professionals will say its because im overweight but then I have had no breathing problems for the previous 13 years.
I also need to be able to move in bed which i am gradually losing the ability to even stand and sit due to swelling around my knee.
What I would like to do with any funds raised is to firstly buy the required Farrow Wraps to assist me into bandaging (action of choice to reduce swelling)and remain in a long term wrap or stocking when reduced as far as possible. off the shelf largest size is 79cm around the thigh, my lower limb is bigger than this now.
To purchase a Huntleigh Lymphassist machine as per Huntleigh website - adapted for my size. As a mark of respect and gratitude I would like to donate one perhaps two to St Anns Hospice, Little Hulton, where I was treated for 12 years - if there is enough to help them have more resources available
For me - I really am afraid that if I don't get things moving in the next 2 weeks - there wont be any more time left.
I would also benefit from a machine which will move the lymph around my body to empty into normal circulation. Now these machines are made to standard sizes not my size - lol.
I need this to happen asap or my life is at risk - I have a CPAP machine at night as the fluid is too much for my airways to cope with - i'm sure the professionals will say its because im overweight but then I have had no breathing problems for the previous 13 years.
I also need to be able to move in bed which i am gradually losing the ability to even stand and sit due to swelling around my knee.
What I would like to do with any funds raised is to firstly buy the required Farrow Wraps to assist me into bandaging (action of choice to reduce swelling)and remain in a long term wrap or stocking when reduced as far as possible. off the shelf largest size is 79cm around the thigh, my lower limb is bigger than this now.
To purchase a Huntleigh Lymphassist machine as per Huntleigh website - adapted for my size. As a mark of respect and gratitude I would like to donate one perhaps two to St Anns Hospice, Little Hulton, where I was treated for 12 years - if there is enough to help them have more resources available
For me - I really am afraid that if I don't get things moving in the next 2 weeks - there wont be any more time left.
Organizer
Susan Moss
Organizer
England
