Thank you for starting this group. I was recently diagnosed with mild to moderate secondary lymphedema. My doctor told me the most likely cause for it was the endocarditis I had six years ago that nearly killed me. She said that the amount toxins in my body while I was ill probably overloaded my lymph system and so here we are.

I was diagnosed in September. The doctor told me exactly what to expect for my treatment and gave me a referral to a physical therapist. When I went to that appointment, the therapist did not even mention massaging and bandaging as I had been told would happen. Instead, she started talking immediately about pumps and garments. To that issue, I told her my PCP had told me about a local charity that would provide the pumps and garments, file a claim with the insurance company, and then "forgive" whatever the difference was between what they had billed and what the insurance company paid. They give the pumps and garments to patients for nothing out of pocket. I'd done some research and discovered the charity was legit and well thought of. When I called them for more information, they told me their history (wife of a wealthy man had lymphedema and she and her husband started the charity because they knew that most people could not afford the needed equipment and garments). She also told me that they would come to my house when it was time to order the pump and garments, and measure me for them. And she said that she knew the clinic where the PT worked and visited them often.

I got a totally different story from the PT. She said the charity was a probably a scam and that she had never heard of them. She said that she wanted me to use a company she liked. (Later found out it was out of network). Didn't say a word about massaging and bandaging--just about ordering the garments immediately. She measured my most swollen leg and told me she was going to send those measurements to the company she liked, get a quote from them for my garments, send a claim to my insurance company, and then let me know how much I owed. I told her I didn't agree with this, and pointed out that measuring that most swollen leg only would mean that the garments made would not help maintain a less swollen leg as they are intended to do per what the doctor told me and what I'd seen on the Internet. The meeting did not go well. But it got even worse. As I was leaving, the front desk told me I had to fill out one more form. That form asked questions like: How hard is it for you to feed yourself? I don't have any trouble "feeding" myself but there was no choice for that. Choosing any option would be saying that I was having trouble doing something that I had no trouble doing at all. All of the questions were like that, and my answer to each was the same. So I told this to the front desk, and they said to just mark the lowest one of difficulty. I said I would not do that because then it would be on record that I had said had slight difficulty doing everything, which is not true. They argued with me and so I finally wrote N/A next to each. If I truly had any problem doing any of the things mentioned, I would have said so. But I would not say I was having problems when I was not. The women then started saying I needed to accept my condition and that I would never get better. Wrong thing to say to a woman who spent six months in a hospital, most of it on a ventilator, with most people thinking she wasn't going to live. I refused to give up hope at that time and I still refuse to give up hope. I also refuse to listen to or be around people who want me to be a victim. And so I told them that while I understood what they were saying, I'm not wired to think that way. That I believe in hoping and working to find if there are solutions to problems, not just lie down and "accept" current conditions. Another kerfuffle with one of the women standing up and showing me her back, which was misshapen. She said that she had to accept her condition and now I must accept mine. I told her I felt compression for her back problem and that I respected her position. And that I respectfully, wanted them to respect mine.

As you can tell, the appointment was a disaster. My way of thinking about hardships was clearly not one that they would accept. And so when I went home I got to thinking about how I not only have lymphedema, I also have venuous insufficiency to a lesser degree. I decided that I wanted to work with a doctor who would have oversight of my treatment and hold any PTs accountable. I first looked for doctors in my city (which is a large midwestern city) and found that the closest one who specialized in lymphedema was over 500 miles away. Then I remembered a vascular surgeon I'd heard about and called them. I'm not sure if this is going to be what I need, but I'm hopeful. I'm also hopeful that with the research that's going on and the techniques for dealing with this are being developed, that I may be qualified for surgical intervention. Meanwhile, I'll keep researching and praying. That worked to help me walk out of the hospital after 6 months bedridden, having had my heart stop several times in the early days while the endocarditis was raging. And I didn't leave the hospital with a bag of pills. I only was taking two pills--an antibiotic to make sure the pathogen causing the endocarditis didn't come back and a blood pressure medication. I believe in having a positive attitude, even when things are the darkest. But I am concerned. I've now been to three providers since September and not one of them has gone through the basics with me, like how to take care of my skin. I hope to learn more here.