My Amyloidosis journey began in the spring of 2015. The symptoms were there for months, but it was easy to look past them. I knew I didn’t feel right, but I didn’t feel terrible either. There were plenty of possible explanations. I was over 50 and had just been through menopause. Maybe my plantar fasciitis was acting up again, causing my foot numbness (which I now know was neuropathy, a telling sign). And I knew my exercise and diet habits weren’t what they should have been. What’s perhaps more significant is that most doctors would have looked past my symptoms, too.
In March 2015, at a checkup with my primary care physician, I told him I was upset that I couldn’t wear my cute shoes for spring because of my swollen feet and ankles. He adjusted my blood pressure medication. But six weeks later, I called him because I was getting worse, not better. After some additional tests, he discovered something was wrong with my kidneys.
He referred me to a nephrologist, and she tested me for various possible conditions before performing a kidney biopsy. The specimen was sent to Mayo in Minnesota, where highly specialized personnel used a microscope to analyze the kidney tissue.
That analysis provided my dreaded diagnosis: immunoglobulin light-chain amyloidosis, or AL amyloidosis. This extremely rare disease can affect your heart, kidneys, skin, nerves, and liver. With this cancer-like condition, your bone marrow plasma cells produce abnormal antibodies that are deposited in your tissues as a type of protein called amyloid, which prevents normal organ function.
Finding the Right Doctor
My mother was — fortuitously — staying with me that summer because she had undergone cataract surgery. I don’t know what I would have done without her. She came with me to my first appointment with an oncologist.
It was a devastating meeting. The doctor had never heard of amyloidosis, though he had printed out a page from Wikipedia. There was nothing he could do, he said.
In that — again, fortuitous — moment, I texted my friend, who had non-Hodgkin lymphoma. She happened to be at her oncologist’s office. She texted me back: “My doctor says you need to see Dr. Larry Anderson at UT Southwestern. He’s the only doctor in Texas who can help.”
If she had not been at her doctor’s office at that time, I probably would not be alive today.
That afternoon, I scheduled an appointment with Larry Anderson, M.D., Ph.D., Director of UT Southwestern Myeloma, Waldenstrom’s, and Amyloidosis Program, and faxed him my medical records.
Dr. Anderson was a breath of fresh air. He understood my disease. He knew what would give me a fighting chance.
“It’s gonna be rough, and you’re not gonna like it,” he told me. “But you’ll come out on the other end.”