The end of 2016 at the age of 49 a few things started to go wrong. Ridges on my nails, bruising easily, continual respiratory illnesses, nausea especially after eating, biting my tongue constantly, frothy urine, and fatigue (the kind where if you don’t lie down you’ll fall down.) Previously I had been hit by a car in 1996 suffering a TBI and then diagnosed with Rheumatoid Arthritis in 2000 and some years later idiopathic portal hypertension with oesophageal varices. So initially a lot of these symptoms had been my companion at some stage over the years and were dismissed because of my chronic conditions. After seven months the nausea was ramping up, bouts of pneumonia continued, urine now has the odour of bacon and faecal leakage began. Gastroscope, bronchoscope, colonoscopy all inconclusive. However, one positive was the commencement of Intragam (IgG) infusions alleviating the pneumonia. Another six months some more symptoms appear. My legs are severely swollen, BP drops to 5090 and dizziness. Referred to endocrinologist who says in two minutes you need a urine test and a Nephrologist. Urine tests, kidney biopsies and referral to haematologist happened quickly. Bone marrow biopsy, ECG, Echo then treatment started at the end of 2018. My biopsy tissue travelled from NSW, Australia to London and then USA before eventually coming back with a 96% probability of Al amyloidosis. In 2021 I am in haematological remission with regular monitoring, a lot of pool laps, positive thoughts, good food, fingers crossed, good luck and refusing to give up, kidney damage, GIT damage, and all the inconvenient symptoms of these, but for the moment alive and laughing.

Keep On Swimming – Linda – Australia