Gary from Ohio

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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Gary from Ohio

Postby gary1955 » Tue Jun 20, 2006 3:04 am

I have primary LE but it didn't surface until I was 40. The right leg was first to swell from stage 1 to stage 3 before my doctor went to a seminar about LE and told me what it was. The left leg was also stage 3 by then. My first trip to the LE clinic was very productive. Over a six week period I was able to get both legs looking almost normal again with MLD and sequential pumping and of course wrapping. During my six week therapy, I discovered I couldn't wrap my feet and ankles myself. Because I didn't have anyone to help me wrap, my legs soon returned to their former swollen state. I had bouts of celluitis with high fevers and fibrosis. I tried to obtain a reid sleeve but the insurance wouldn't pay for one. Two years went by and I returned to the clinic. This time I was told the clinic no longer provided the wraps up front and I would have to buy them myself if the insurance wouldn't cover them. Luckily at the time I had an HMO that paid for them. But like everything else, that went to hell because they started raising their premiums where I couldn't afford them any longer. Also, the clinic informed me they no longer do MLD. They had a new doctor who was managing the clinic who turned out to be a total waste of my time. The first doctor who ran the clinic was a woman oncologist. She was wonderful but ended up quiting the program because she got fed up with the insurance companies turning down everybody. Not because she was worried about getting paid. Because she was a caring doctor who understood the plight of the LE sufferer. So at the end of my second therapy visit, my legs are still as bad if not worse than when I initially started.

I recently returned to the LE clinic and had a small amount of therapy done. They documented the results from wrapping and using a sequential 8 chamber pump. I am suppose to get a new pump this week. I still have problems wrapping myself and have to rely on family when I can. My therapist isn't recommending a reid sleeve. She thinks they are not effective enough. She is betting on the pump to be the most effective. I know how most of you feel about using pumps. I discussed the concerns of the negative effects of using a pump with her. I guess I'm just going to have to be real careful and make sure the LE doesn't move in to my groin area. As far as internal damage to my legs from using a pump, I hope there isn't any. I'm getting really frustrated as to what I can do with these legs.
gary1955
 
Posts: 37
Joined: Mon Jun 19, 2006 2:40 pm
Location: Cuyahoga falls Ohio

Postby marigold » Sun Jun 25, 2006 7:38 pm

Gary, your story is the kind that makes my blood boil! :evil: :evil:
It just shows how tenuous is our ability to obtain the needed therapy and equipment we need for this illness. When was it that you first saw the doctor and had to wait until he attended a seminar and found out what LE is??? We MUST get medical personnel educated about LE!
And now your LE clinic doesn't have anyone doing MLD???!!! :roll: :roll:

You have brought up one point which I have wondered about and that is, how are people who live alone supposed to take care of themselves if they are unable to physically do so? I, fortunately, am not so badly swollen that I cannot bend over to do my massage and wrapping (at least, so long as I do yoga to keep myself limber!). I asked my therapist about others less fortunate, and he said, "Well, most people have a family member who can help.l Or else they have to have someone come to their home and do it." Since a therapist is very expensive (insurance pays for a limited number of visits per year, normally), can you either qualify for a home visiting nurse, or just hire someone to help? Anyone can learn enough to help you. My boyfriend (at the time) learned by observing the therapist how to do massage and wrapping, so when he was over, he would do it. (Alas, we broke up....there goes my free therapy! :wink: )

The Lymphatic Disorders Research Center at Stanford is studying development of a new type of pump which would replicate manual massage in a supposedly more efficient way.

Marigold
marigold
 
Posts: 26
Joined: Fri Jun 16, 2006 7:55 pm
Location: California, USA

Postby gary1955 » Mon Jun 26, 2006 6:03 pm

Marigold... thanks for your reply. It has been really frustrating for me to manage this LE because of the wrapping problems. In answer to your question, I do not have any help right now except when i can get a family member free to come over and help me. I first saw a doctor in 1996 and he didn't diagnose the LE until 1998. Regarding my clinic not doing MLD anymore.... yes it kind of worries me that something has gone terribly wrong there. MLD is so important. Scary!!

Ideally, the perfect solution to this is to lose all this excess weight so I can do it myself. I just read Barbara's post and success stories like hers are inspiring. That's probably what it's going to take for me. I'm just going to have to get so fed up with the inconvenience of not being able to wrap my own legs that I'll do something about this weight and fix the problem. I have Medicare and they are a real pain to get to pay for anything regarding LE. I originally was trying to get in to a facility here in NE Ohio that would be able to accomodate me with the wrapping while I participated in a bariatric nutrition and exercise program. Well, the only way I could do that was to get on Medicaid and there was a problem with that because they would take my bank account. I can't lose that because i would need the funds to start back to work(on disability now).

It's pretty much up to me losing this weight. Easier said than done but many have proven it can be done. I just need the will to want to succeed but sometimes the pain from the LE makes it really difficult to get motivated to start a lifestyle change.
gary1955
 
Posts: 37
Joined: Mon Jun 19, 2006 2:40 pm
Location: Cuyahoga falls Ohio

Postby angieboo401 » Fri Jul 14, 2006 12:17 pm

Hey I have been way behind .. but just wanted to see how you were going Gary... I got a pump and it does help me, however in conjunction with the MLD and wrapping. From my understanding the pump moves fluid but doesn't move the protein. It takes the wrapping or MLD to move the protein. I did get reid sleeves and they are great. They provide better compression than wrapping. You actually callibrate them to the pressure needed. Don't give up pestering your therapist to help you get them.
angieboo401
 
Posts: 9
Joined: Mon Jun 12, 2006 10:22 am
Location: Tennessee, USA

Postby gary1955 » Sat Jul 15, 2006 2:15 am

You're right Angie... MLD and wrapping are the most important part of therapy. I need the reid sleeves there's no doubt about it. Thanks for the reply.
gary1955
 
Posts: 37
Joined: Mon Jun 19, 2006 2:40 pm
Location: Cuyahoga falls Ohio


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