Lymph is Good
chronicles the journey of an active 30-something Dallas-ite trying to keep her head up while grappling with primary lymphedema.

A Note to the Professionals

Dear [Doctor, Kinesiologist, Physical Therapist, Massage Therapist, Nutritionist, etc.],

I hope this note finds you well. 

I’m writing to update you on my condition for which I came to visit you for on [insert date here]. My chief complaint when I came to see you was knee pain with associated swelling in my right thigh. Since seeing you I’ve gone through a litany of tests including, as you might already know, an MRI of my knee and thigh, a CT scan of my pelvis/abdomen, multiple ultrasounds of my legs, an ABI test, and several rounds of bloodwork. 

My right leg is still swollen and all of my results show that I’m super healthy. 

Though it may seem odd for me to be reaching out, I wanted to bring my condition (which was diagnosed in January 2017) to your attention: primary lymphedema. As things currently stand, there isn’t much in the way of research on the condition, nor is there much in the way of treatment. During the year in which I sought out a diagnosis my condition worsened and the swelling extended from my thigh to my toes and upwards into my pelvis. 

Through bandaging and lymphatic massages I managed to reduce the swelling from a 5-6 centimeter difference to 3-4 centimeters which alleviated the pain in my knee. But after nearly eight months of suffering, the long-term damage was done. 

I wanted you to be aware of the condition in the hopes that when next you’re presented with a similar patient that you’ll recognize your limitations and fall back on the “care about your patient” part of medicine. Bouncing from Doctor to Doctor without a diagnosis made the unknown condition harder to bear… the lack of curiosity, the lack of follow-up, and the lack of follow-through was torture.   

I feel lucky to have received a diagnosis and pleased to have advocated successfully for one. But, through this process, I felt compelled to share my disappointment with the medical community for the generalized lack of empathy towards a patient.

-Your Patient

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