I was diagnosed at 64 years young, with non-cancer related, secondary, advanced-stage-two lymphedema in both legs – toe to torso is how I put it. In the concluding diagnosis by the specialist, the cause was a procedure and repeated aspirations over a period of months, by a qualified podiatrist. He was not required to know that what he was doing would permanently traumatize the lymphatic system. And then a heartbreaking revelation. The lymphedema could have been recognized by my PCP in early stage one. This would have greatly minimized its lifelong impact on my physical and emotional health, my work life, my finances, and my retirement plans to move closer to my son’s family and enjoy my granddaughters.
But, except for oncologists, America’s medical community in general isn’t required to know how to avoid undo trauma to the lymphatic system, or to recognize it in the early stages to minimize its impacts and reduce lifelong treatment costs. So, it did happen to me. And, it did go undiagnosed until it was quite advanced.
Thank God for my cardiologist. She sees me only once a year for a well managed atrial fib condition. Minutes after she walked into the room, two years after the procedure, she asked when my lymphedema had been diagnosed. There wasn’t anything in my file about it. I replied that I didn’t have lymphedema. She gestured at my now very large legs. I told I had been complaining about my legs to my PCP for two years. All I heard was I was just getting fat. And I was truly doing everything I could to lose weight, but now my legs and feet were so fat it hurt just to walk. She put her arm around my shoulder and told me, oh my dear, you didn’t get fat. You got big. The difference is lymphedema.
I eventually got past the rage and accepted my new lifestyle. The one chosen for me by doctors who, in their ignorance, caused it or failed to recognize it. In contrast, they go on with their lives with impunity in my state, because knowledge of this condition is not required or common outside of oncology. Not common? Google “clear protein rich fluid.” That’s what was “leaking” from my foot and puzzling my podiatrist, three months after his procedure. Hence his repeated aspirations of that fluid over a prolonged period of time. The search brings back pages full of a whole bloody medical supply industry out there for us, and the word lymphedema is all over them. Can you say, not that uncommon!
It’s now two years since I was diagnosed. I’m doing pretty well. It is unfortunate that I must keep working because its bad for my health. I’m a systems analyst providing tech support over the phone. Eight to ten hours of sitting – the worst scenario for lymphedema in your legs. With a return-to-work requirement from my specialist, I’ve been allowed to walk “as needed”; which is more than is usually allowed with this position. I’ve told them I could keep on working while I walked if I had a wireless headset. Walking time means I’m not taking as many calls as the others and that could cost me my job and my insurance. You’d think they’d go for that increased productivity. They didn’t. Management also wasn’t interested in why a reasonably used zero gravity office chair could be medically supportive – even if I did pay for it myself. If my doctor made it a requirement, they would consider it an unreasonable accommodation for the workplace and terminate me. However, big rubber ball “chairs” have been allowed for back issues!
So I deal with it. I laugh a lot with my callers. I chuckle with co-workers when I hear, “Power walking again?” I tease with my diabetic friends that at least I don’t have to stick myself with a needle every day! I call my granddaughters three states away, over the internet. I’m in my zero gravity chair. We chat. Jess steps me through making an origami bird. Alexa dances for me, and I read to them. Throwing kisses to the monitor is precious and welcomed. But it’s not the same as their arms around my neck. I wish I could retire and move to be closer to them. That was the plan.
Sometimes I cry when I’m so tired or the arthritis in my hands makes it twice as hard and painful to pull on my class 3 stockings and go to work. I get frustrated by knee and hip pain, not unusual for people in their 60s. And, wouldn’t you know; now the bunions have decided to be a pain! The surgeries that could fix those complaints are out of scope when you have advanced lymphedema in your legs. This makes me wonder, how long before I need a wheelchair? What am I going to do when my hands aren’t strong enough to pull up my stockings? Medicare won’t cover that unless I’m in a nursing home.
I must be selective where I live because I need a medical community that knows how to support my lymphedema. That lack of knowledge is how this happened to me. I have a specialist and a different, enlightened PCP right here. There isn’t a lymphedema specialist even close to where my son’s family lives. So it means doing this on my own, three states away from my only family.
I’m eligible for Medicare, but I must keep working because it takes full coverage insurance to maintain my advanced stage two lymphedema. Without it I can’t afford my stockings and night garments, or the bandages when I need them. As it is, my company insurance only allows for two pair of stockings twice a year; and a pair of night garments but I pay 20%. I can’t fford additional stockings on my own. So it’s wear one, wash one.
This past winter I experienced my first battle with cellulitis. For three months only essential walking, no MLD, no sequential pump. Those would spread the cellulitis. Beat the cellulitis, but my lymphedema was unstable by twenty pounds! It would be three more months before I could go back to work.
Even with my company insurance, I am still paying off right at $3000 the insurance didn’t take care of, for the decongestive and aqua therapy modalities needed to stabilize my condition. That was a lot less that what my doctor wanted, but insurance draws the lines at “x” modalities for all lymphedema stabilizations. When I reached the insurance limits, I had to continue on my own, which meant it took even longer to get back to work. I was six months on disability pay, going further in the hole with what the insurance doesn’t cover. There are “x” modalities allowed to stabilize lymphedema. If yours is more advanced than what they have based their decision on, aw gee too bad!
I am fortunate that I am still able to work, because I’m in a catch twenty two, life and death situation. My job is actually bad for my lymphedema, can’t change because of my age and job market, so I have to keep working in an unhealthy environment to keep private insurance because Medicare doesn’t cover even the minimum for stage two lymphedema, so I can get medical help when I need it, which will be sooner, because I am working in a job that is bad for my lymphedema.
When I thank God that I can still walk ; I also pray to open minds of those who make decisions for Medicare and private insurance companies. Open minds and eyes to really learn about lymphedema and how they could save money with more and discriminating support. It can be managed better and cheaper, when it isn’t allowed to escalate for lack of appropriate care. A simple example, Stage one will not require as many modalities of PT as will Stage two. If Stage two is treated with adequate modalities, they have a more stable recovery and better able to fight off infections that could destabilize them again and require more therapy, sooner. Support lymphedema by a best effort benefit level for the stage of the lymphedema of the claimant, not one benefit level for all stages.
This is not a disease from contagion, a risky or negligent lifestyle, or, except in rare cases, is it hereditary. It is caused by doctors who are trying to cure or treat something else. And too often, as it was for me, by doctors who meant well, but lacked the essential knowledge.
When this bill is passed, I know it won’t be that much longer and I will be able to quit working, get out of the catch twenty two loop, and have the time and energy to take the best care of myself that I am able to, or have the insurance means for a trained person to assist me in the doing. This will actually reduce Medicare’s costs for me to live a healthier life.
I hope it also mandates that all physicians must know what actions traumatize the lymphatic system, and how to recognize the early stages of this condition, so there isn’t another case like mine.
