The Importance of Advocating for Your Medical Care

I spent years on medications to keep my rheumatoid arthritis flare-ups under control. One of their known side effects raises the odds of a Deep Venous Thrombosis, which is a serious blood clot. My first DVT happened roughly a decade before the second one. That second episode is the reason I feel compelled to write this, because of how angry I became with the staff treating me, how panicked I was about the pain, and how uncertain I felt about where it would all end.

The first clot nearly cost me my leg. Doctors came close to amputating. Somehow I prayed and held onto the belief that I would stand on my own two feet again, and whether or not those two things are related, I avoided the surgery and recovered on a straightforward course of medication. The second time was different in how it announced itself: my other leg was in terrible pain, with a red, burning heat spreading through the skin and muscle. By then I had decided I would not sit quietly and wait to be told what was wrong.

I went to the ER because the leg throbbed and the sensation was familiar to me. The doctor assigned to my case said it was not a blood clot, handed me a prescription, and told me I would be fine. I went home and kept watch. Through the evening the leg swelled more and the pain climbed past anything I could stand, so I was brought back in. Several lab tests later, the verdict was a simple edema. More medication, and home again.

The second day arrived with no improvement in the swelling, and my anxiety only grew. I saw the clinic doctor that morning after waiting several hours, and nothing he said eased the pain or the worry. He told me I was fine. I told him and his assistant that I wanted a full scan of the leg. The assistant said only the doctor could order it. The doctor dragged his feet, called the scan a waste of time and money, and repeated that there was nothing wrong. I kept pressing, remembering what had happened ten years before, until he finally gave the assistant the go-ahead.

They wheeled me down to radiology while I sat there boiling with anger, resentment, and fear about what came next. The radiologist took one look at the swelling and seemed genuinely alarmed. He asked whether the doctor had actually examined the leg. I said yes, the physician had already seen me, but he sent me straight back for another look anyway. My heart was hammering the whole way.

When I was back in the office the doctor finally looked properly concerned. He paced, thinking through what to do, then called the secretary and asked her to bring my husband in. With both of us sitting there he said it was the worst DVT he had ever seen and that I needed to be admitted for an emergency procedure right away.

My children had been taken to a show that morning. I had arranged it so they would not have to worry, but I was the one who was terrified, not sure whether I would see them again in good health. DVT is a high-risk situation, and every stage of treatment has to move fast and be handled carefully. Once I was admitted, I held onto the same thought that had carried me through the first clot: if I stayed focused on getting home to my family in one piece, I could come through this one too.

I did come home, and I gave myself the time to heal. It took that focus and the willingness to challenge the medical staff until they checked their own diagnosis a second time. That is the whole point of writing this down. Learn about your own medical conditions. Know how to speak up for yourself when the professionals in front of you are not meeting your needs. Whatever your age, take responsibility for understanding what is happening in your body and keep showing up, consistently, with whoever is caring for you.

-Anonymous Contributor