James’ Story

I was diagnosed with Primary Lymphedema Tarda approximately six years ago if memory serves. What a life changing diagnosis? From the first six weeks of physical therapists to having to purchase very expensive compression socks that are not covered by my “good” insurance provided by my employer I have had this disease touch nearly every area of my life. I have been struck by how my treatment from day one has been disease centered rather than patient/person centered. I personally feel like the medical professionals have had kind of a “that’s tough” attitude for the most part. Starting with the physical therapists who seemed to care little for how in the world the compression wrapping was going to affect my whole life to the store from which I purchase my garments that seem to raise prices significantly every year or less I really have not found much support. My own primary care doctor has been the most supportive and she is not a specialist. The person who diagnosed me was a vascular surgeon with BAD bedside manner who rudely and snidely implied that my disease was from weight gain. The specialist I saw was very good and countered that original assertation of my disease’s origin with primary lymphedema tarda. While she was a good doctor her office was disorganized, apparently, and I was left out of the loop when I learned by going to an appointment that her office had moved to a part of the building to the hospital wing. So, I would now have to register as an outpatient. Having had this experience before I fully understood the ramifications and knew that mystery charges would certainly be added to my account since hospitals are allowed to charge willy-nilly as they please, no copays, coinsurance. I was not happy with this at all and left that doctor. Since then my regular doctor, without expertise, has been prescribing my socks, reluctantly. Unfortunately, there really are no stand alone specialists in my area that are not affiliated with wound care and therefore with a hyperbaric chamber. To be in an office with a hyperbaric chamber in my state means that all doctors in that office must see all patients as hospital outpatients. Very bad from a patient’s point of view when the patient is like me. I just plain cannot afford this. Personally, despite my insurance and flex plan, I cannot afford this disease. And I sure wish the damned garments were not so ridiculous. I live in a place where 100F + is very common, so, I wear short. Can’t we have some socks that go with shorts? And can’t we have some garments designed for water and not just swimming pools, I mean swimming in the rivers and lakes, oceans, scuba, float trips, surfing, etc. Aren’t we supposed to stay active? Well, those are activities. On that note the socks designed to be used for athletic activities (not runners sleeve, etc) are EXPENSIVE!!! Is lymphedema the step child of diseasease? And since my disease’s onset is not due to cancer there does not seem to be a lot of assistance out there. That’s my rant. I sure will be happy when non-patients begin to take this more seriously.