Living With Lymphedema

[n0jaa]

Some people have asked me about the disease I have to deal with on a daily basis. #I have found a news article that explains it very consisely. #Included is a link to this article.

The disease in question is called Lymphedema. #Few people, and even fewer doctors, know about it, and most doctors end up mis-diagnosing the disease as something else.

One of my missions in life is to make the general public aware about this disease so that more funding can be obtained for reasearch and much-needed therapy and patient supplies, and especially to educate doctors about this disease. #To accomplish this, I run an email discussion list on Yahoo Groups, and I publish a newsletter in cooperation with a local hospital.

As of now, few insurance companies, including Medicare, cover it; the ones that do cover very little. #This results in the patient having to bear the brunt of the expenses out-of-pocket, which can easily, and rapidly, reach into the many thousands of dollars per year.

Personally, in the past three years, I have had to cover over $30,000 in expenses out of pocket for all of my needed therapies, doctor visits, theraputic equipment and supplies.

A good resource for Lymphedema information is the National Lymphedema Network (http://lymphnet.org)

Below is the link to the newspaper article.

Comment:
A good newspaper article about Lymphedema. Very descriptive and concise.

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Story:
Living with Lymphedema

Think of a busy, multiple lane highway that links several cities together. As long as the highway is clear, traffic whizzes by 24 hours a day at astounding speeds that leave your head spinning.

When a major accident occurs on the highway, several lanes may be forced to close. The multiple lane highway is now down to one lane.

For more of this story, click on or type the URL below:

http://www.southernillinoisan.com/article....770.txt (http://www.southernillinoisan.com/articles/2006/06/23/health/doc44984ef068beb809697770.txt)

[KC0VWU]

Quote[/b] (n0jaa @ July 09 2006,15:38)]Personally, in the past three years, I have had to cover over $30,000 in expenses out of pocket for all of my needed therapies, doctor visits, theraputic equipment and supplies.
Serious question for you... Has any of this stuff done any good? I ask because I know several people with chronic conditions who spend a lot of money to get very little in return.

[n2nh]

This does sound a lot like edema. I often wondered if this is the problem my wife had, rather than the diagnosed onset diabetic caused edema. Similar to this, she had chronic pain, extreme swelling below the knees and wounds that were hard to heal. I also know from what you said about insurance, she was unlikely to be treated for Lymphedema even if she had it.

[KC0VWU]

Quote[/b] (n2nh @ July 09 2006,23:02)]I also know from what you said about insurance, she was unlikely to be treated for Lymphedema even if she had it.
Why won't they pay to get it treated?

[K6BBC]

Thank you for the information. I wish you well.

K6BBC

[n2nh]

Quote[/b] (k6bbc @ July 11 2006,00:24)]Thank you for the information. I wish you well.

K6BBC
Thanks, but mercifully her nightmare has ended. http://www.qrz.com/iB_html/non-cgi/emoticons/smile.gif

[n0jaa]

Quote[/b] (KC0VWU @ July 10 2006,18:18)]Quote[/b] (n0jaa @ July 09 2006,15:38)]Personally, in the past three years, I have had to cover over $30,000 in expenses out of pocket for all of my needed therapies, doctor visits, theraputic equipment and supplies.
Serious question for you... Has any of this stuff done any good? #I ask because I know several people with chronic conditions who spend a lot of money to get very little in return.
Not really. #Although the compression pump may show some promise. #The only thing that has really worked so far is the compression bandaging. #

I have tried various compression devices, none of which have worked. #That doesn't necessarily mean they are no good. #What will work for one person might not work for another. #I know of some Lymphedema patients in my support group that have used some of these devices successfully.

All I can do in the meantime is continue with the compression bandaging while analyzing and considering new types of therapy devices that might be introduced.

One thing the Lymphedema has done to me is completely changed my lifestyle. #Before it really hit me, I was a rather active person with a good job and able to go out and do things. #When the Lymphedema gave me the proverbial one-two, I was completely laid up for two years, couldn't work, couldn't go out, had to have others do my shopping for me, and had daily visits from home nurses and weekly visits to doctors and therapists.

I have managed to regain some of my mobility, but I can no longer do the things I used to be able to do. #Currently I can't work, and I have trouble getting around.

I'm hoping one of these days the swelling will get down to where I can manage it on my own and return to some semblence (sp?) of normalcy.

This is one huge reason why message boards are so important to me. #Often the boards and amateur radio are my only contacts to the outside world.

[n0jaa]

Quote[/b] (n2nh @ July 11 2006,00:02)]This does sound a lot like edema. #I often wondered if this is the problem my wife had, rather than the diagnosed onset diabetic caused edema. #Similar to this, she had chronic pain, extreme swelling below the knees and wounds that were hard to heal. #I also know from what you said about insurance, she was unlikely to be treated for Lymphedema even if she had it.
Yes, Lymphedema is a type of edema, although due to different causes than other edemas. The edema that diabetics often experience is a different type of edema, although in some cases it has evolved into Lymphedema.

The insurance is the hardest part right now. Medical insurance companies and Medicare do not yet consider Lymphedema a disease, so very few of them will cover it. Those that DO cover anything will cover only a very small amount. Most insurance companies, for example, will only cover a week's worth of therapy for Lymphedema.

It's an uphill battle, but one that I have dedicated myself to winning.

[al2i]

Now that I've read up on it I really wish you well Paul. That is a huge bummer. Best wishes OM.

[n2nh]

Quote[/b] (n0jaa @ July 11 2006,14:59)]Quote[/b] (n2nh @ July 11 2006,00:02)]This does sound a lot like edema. I often wondered if this is the problem my wife had, rather than the diagnosed onset diabetic caused edema. Similar to this, she had chronic pain, extreme swelling below the knees and wounds that were hard to heal. I also know from what you said about insurance, she was unlikely to be treated for Lymphedema even if she had it.
Yes, Lymphedema is a type of edema, although due to different causes than other edemas. The edema that diabetics often experience is a different type of edema, although in some cases it has evolved into Lymphedema.

The insurance is the hardest part right now. Medical insurance companies and Medicare do not yet consider Lymphedema a disease, so very few of them will cover it. Those that DO cover anything will cover only a very small amount. Most insurance companies, for example, will only cover a week's worth of therapy for Lymphedema.

It's an uphill battle, but one that I have dedicated myself to winning.
I'm certain if anyone can win this one, that with your determination, you can.

The part that sort of caught my attention was the description of how the legs would get heavy. Diabetic edema isn't normally like that, but her legs were extremely heavy. People used to think I weight lifted, but it was just in treating them that I got quite a workout.

[n0jaa]

Quote[/b] ]I'm certain if anyone can win this one, that with your determination, you can. #


Thanks for the vote! #Someone has to do it, and fortunately, there are more Lymphedema support groups springing up around the country, so I think we will be able to get some things done. #

I, myself, run an email list for Lymphedema, and I publish a Lymphedema newsletter that goes out to a lot of doctors and nurses.

Quote[/b] ]The part that sort of caught my attention was the description of how the legs would get heavy. #Diabetic edema isn't normally like that, but her legs were extremely heavy. #People used to think I weight lifted, but it was just in treating them that I got quite a workout.

It's quite possible that she did indeed have Lymphedema. #Usually, diabetic swelling is due to poor blood circulation in the legs (peripheral artery disease or chronic venous deficiency) but if left untreated can progress to Lymphedema, and has in many cases.


AL2I said...
Quote[/b] ]Now that I've read up on it I really wish you well Paul. #That is a huge bummer. #Best wishes OM.

Thanks for the well wishes! #Definitely needed here! #I have improved significantly over the last few years, but still a ways to go yet. #Although I suspect if it hadn't been for my aunt and uncle, I'd probably be in a wheelchair right now after having my legs amputated.


And BBC, I didn't forget you, either. #Thanks for the well wishes! # http://www.qrz.com/iB_html/non-cgi/emoticons/smile.gif