New to group, my story.

[kymchi]

Hello! I'm Kim, I'm 28 from Carlisle, Pennsylvania. Two years ago, I had an odd rash on my legs, like anyone else I scratched and scratched. I had open wounds for probably a month. One day they started leaking a clear fluid. I'd never seen anything like this so I let it go. Probably another month later my legs were twice the size they started out as and I went to the doctor. He diagnosed me with lymphedema at that time. I had to go to the wound care clinic and have my legs bandaged so the open wounds could heal. I was then sent to a lymphedema therapist. She was great and was a lot of help but eventually discharged me. The only thing I got out of the deal was a lymphedema pump. She got me an appointment with a guy to measure me for garments but the appointment was weeks away and by then all the fluid came back. What did he tell me to do? Lose weight, run in marathons he said, you'll feel better he said. This dolt actually thought I'd just start running marathons and magically everything would be alright. Meanwhile, I can barely walk, I practically waddle around. All of this happened two years ago, my lymphedema has essentially gone untreated since then, except for my usage of the pump, anymore that seems to be futile. Fast forward to Thursday of last week, I'm at work and all of a sudden I start vomiting and I have this severe pain in my lower back. I go home, it gets worse, and a few hours later I go to the ER. The doctor comes into the room, looks at me, and tells me I'm fat which is going to cause back pain. Gives me something for pain, and vomiting and sends me home. The following Sunday I start getting pain in my right leg, and it swells up HUGE, I'm talking my calf is the size of my thigh. I see my doctor on Tuesday, he says I have cellulitis and gives me a 5 day course of antibiotics. I see my doctor again today, no change, it's huge, red, hot, and painful. He gives me a 10-day course of a different antibiotic and tells me if there's no change by Sunday to go back to the ER and he gives me a paper to give them to tell them what's wrong. I also had an ultrasound on my leg today to make sure there were no clots, of course they could only ultrasound one part of my leg cause of the swelling but I guess it's better then nothing. So I'm to the point where I've had 7 prescriptions in the last 8 days, I think the only reason I'm not vomiting uncontrollably is because I have medicine for that, my leg is huge tight red and painful, and I feel hopeless. I have insurance and they paid for my pump but no matter where I go I get told that my legs are "too fat" for compression garments, also my insurance won't pay for them, I'm employed but with all the work I'm missing, I wouldn't blame them if they fired me. I just don't know what to do, I'm at my wits end here. There are no specialists anywhere near me, and my legs are so huge I can't wrap them myself. I live with my boyfriend but from the get go he's found my legs to be "disgusting", so he won't help me wrap them. I can't get garments cause apparently they don't make them in size gigantic. And on top of everything else EVERYONE tells me that if I just lose weight everything will be okay, I just want to punch them in the face and ask how I'm supposed to do that when I can barely walk two feet. I guess I'm done for the night, I have to try to get my leg in a position where it's not in excruciating pain and sleep.

[patoco]

Hi Kymchi

Super welcome to the family here, but what a horrible experience you've been through. It totally infuriates me to hear people being told to just loose weight that they are too fat.

The medical care given to you is an example of the worse care possible, from beginning 'til now. The LE therapist should have don't what is called CDT or MLD and not just treated you or even had you get a pump. BTW, I am simply nto a real fan of the pump either as it has caused problems for many people who have used it. After CDT/MLD, you needed to be using short stretch bandages for compression wrapping of your legs.

If the swelling had returned as massively as you said, that garment fitter should NOT have measured you for any garments. That needed to be measured when your legs were at their smallest and the swelling kept low so you could have worn them.

Finally, that dummy treating the infection should have attempted at least some blood work to determine exactly what bacteria is causing the infection. The wrong antibiotic is as bad as no antibiotic. If there is a Infectious Disease doctor in your community, you urgently need to get to them. They are specialists in understanding and treating infections.

This page has a list of certified LE therapists in PA, trained and certified by the Vodder School:

http://www.vodderschool.com/find_a_ther ... ion+Search

There is a clinic in Carlisle called First Choice Rehabilitation Specialists. 866 723 6682

http://www.firstchoicerehab.com/first_c ... lists.aspx

Another place is called Cumberland Physical Therapy and they too claim to treat LE (lymphedema).

http://www.cumberlandphysicaltherapy.co ... gement.pdf

They are located in Mechanicsburg 717 591 3000.

Phone around and see what you can find out from these places.

Check with the Carlisle Regional Med Ctr - Cancer Center. because cancer so often causes lymphedema, they may know of some therapist close by too that can help or even know a doctor in your area that is at last familiar with LE.

Talk to HR at work and see what options may be available for you there.

Here is a info page on MLD/CDT:

http://www.lymphedemapeople.com/wiki/do ... herapy_cdt

Leg Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

Lymphedema Cellulitis

http://www.lymphedemapeople.com/thesite ... ulitis.htm

Hope this can help. Try to keep that chin up and remember, we are all here for you

Pat

[blubrdfrend]

Welcome Kymchi, We are glad that you found us. There is so much information on this site that will help you. The understanding and support is wonderful

Unfortunately there are few physicians that are familiar with LE. Please don't be discouraged by the uncaring attitude of some of your contacts. I am also sorry that your disgusting bf is not supporting you at this frustrating time. Remember that in spite of a medical degree the physician works for you. It is unfortunate that you will know more about LE than most of the people who will care for you.

I have used the pump. I quit using it several years ago and I do not intend to use it again. I read several articles that explained that the pump may force the LE fluid into undamaged tissue. I read one report that said the patient had LE that had affected the leg. Later she developed LE of the groin and felt that the pump had caused it.

I have had LE since I was 17 years old although I was not diagnosed for several more years. I am 66 years old now. I promise that you can have a satisfying life. It is not over for you. It may not be the life that you had planned. You may not do all the things that you had intended to do before LE, but you will discover that life is still worth living. You will also discover that there are people that will love you and accept you exactly like you are.
Betty