As a nurse for 18 years, I had never heard of amyloidosis
Three years ago a dream came true. After years of trying, l was blessed to give birth to my son.
Shortly after giving birth, I began to experience a series of strange health issues ranging from severe joint pain, severe fatigue, digestive disorders, rashes and general malaise. I consulted a Dermatologist late 2016 for hair loss, later determined to be alopecia areata. Labs tests were completed and a number of abnormal results including a positive ANA (looks for autoimmune diseases), Positive SCl-70 (a test for Scleroderma), abnormal Immunoglobulins and elevated CRP (measures protein in the blood) and Sedimentation Rates (used to detect inflammation in the body) were noted.
During this period I became increasing tired. Sleeping most of the time when not working. I had no energy. Just feeling ‘off’. I had multiple consults with a rheumatologist regarding the Positive SC-70 and ANA. Five rheumatologists in total, could not offer a definitive diagnosis. Diagnoses ranged from Systemic Scleroderma to “Not really sure”. My healthcare management plan was to just “Watch your labs”, even though CRP and SED Rates continued to climb.
Around August 2018, I noticed a change in my urine. It was noticeably frothy, and a home urine test strip indicated proteins greater than 4000. My Primary Care Provider ordered a renal ultrasound, 24-Hour urine and a nephrologist consult. The 24-Hour urine indicated proteins greater than 4000 along with other abnormal findings. A renal biopsy was completed in November 2018, which revealed AL amyloidosis.
In November 2018, after being referred to a local hematologist/oncologist, I was told that I needed to begin treatment as soon as possible if I wanted to see my son’s 5th birthday. Specialty treatment is not available locally, and I was referred to Tennessee Oncology in Nashville, TN.
I began treatment with CyborD at the end of December, 2018. I am waiting to complete planned cycles before undergoing Stem Cell Transplant. I am receiving chemotherapy locally and will be returning to TN for the Stem Cell Transplant. We are monitoring renal function, which continues to decline, before determining if the long term plan includes a Kidney Transplant.
I have been in healthcare for 18 years. As a nurse I have helped care for many patients with many diagnoses. As my career transitioned into Quality and Patient Safety, I have helped facilities implement patient safety programs and initiatives to improve patient outcomes. Before November 2018, I had never heard of Amyloidosis. Now…it is my goal to help raise awareness. We need a cure!