Help please !

[memetime0029]

Hi, I am meme, and I desperately in need some help.

I am new here and new to having Lymphedema as well. About a year and a half ago I suffered a blood clot in my left lung, while in the hosp they diagnosed me with Lymphedema. I had never heard of it, have no clue how I got it, but I have 2 extremely bad knees to the point its bone rubbing bone. Due to the prior blood clot ( it was gone in 5 mos ) since been checked and no more blood clots have formed so good news there but they are keeping me on a low dose blood thinner for the rest of my life. No orthopedic surgeon will touch me due to the blood clot risk and I respect that but mean time my knees are beginning to hurt to the point I can barely get up and walk so I am relying on my wheel chairs more and this I hate because I was walking okay then I fell months ago and well the knees said no more. I have the Bio Compression Pump I use and the special wraps I use when I can get someone to stay with me , can't get up with them on they slide off no matter what I do so I get aggravated and toss them in the bag, only my husband can put them on and when he has to run errands my friend sits with me but she can't put the wraps back on properly when they slide down. When my wraps are on my knees feel so good, and don't hurt but I can't go anywhere, even to the bathroom that they don't slip down my legs. Mine come from the ankles to my thighs. Anyways I am looking for a knee support that will go around my 42 inch leg. No my knee is not 42 inches, but just above the knees is where my lymphedema is so in order to wear the knee support that I can put on and off by myself I need a 42 inch to fit comfortable. Everywhere I have looked the measurements only go to 36 inches or the price is way over 100.00 plus dollars. I have insurance and one place said they would work with me in getting the right size etc but they want me to pay my full deductible before they will even see me. I said I only am supposed to pay the copay why the whole deductible but that's their policy. Does anyone know where I can find a knee support, not a brace, not a pull on but one I can wrap that will fit me and not cost so much?? I would greatly appreciate any help.

[Whitesugar]

I will have a look in my catalogues today. I feel confident one of the wraps available in the uk will fit you and most of them come from the States anyway which is where I am assuming you are.

[Whitesugar]

Just a thought...are you wearing a stocking liner or tubular bandage under the wraps? They don't stay up on bare skin usually.

[memetime0029 in reply to Whitesugar]

I have a special stocking plus a fiber type sticky fabric that goes over the stockings. That does not help either.

[Lynora]

You could try contacting JUZO USA and ask their customer service team if there is a rep in your area who might be able to advise. Their wrap products are great.

My mother was put on long term blood thinners following a blood clot - her consultant orthopaedic surgeon did a knee replacement 18 months later. She did not suffer complications, nor did she require a blood transfusion.

[memetime0029 in reply to Lynora]

Serious, omg that's wonderful news and hope for me. I am in the US too.

[Lynora]

Forgot - check out a website lymphedemapeople.com - US based - patient led with lots of information about products, treatments and insurance options.

[Whitesugar]

I have looked at all the wraps we have available to us in the UK, but unfortunately I can't see any that would be big enough for you. Your above knee measurement of 42" equates to 107cm and they don't come any bigger than 100cm circumference above the knee. The only option would be a made to measure wrap. If you have a Lymphoedema Specialist you could ask about being taught to self-bandage.

[memetime0029 in reply to Whitesugar]

Thanks for trying.

[memetime0029]

Update: Yay, I found a company here near me that's willing to customize what I need for a lot less than expected. I have my appointment for 2/9/17. Will post the outcome.

[Whitesugar in reply to memetime0029]

Fantastic! Good luck with it.