In late 2006, I was diagnosed with severe chronic neutropenia at age 26 after seeking routine blood tests, thinking I had low iron levels as I was tired all the time and couldn’t shake infections.
I knew something must be serious when my doctor called with blood results and advised that I needed to go to the hospital for Oncology review due to blood results indicating high inflammation and total white blood cells severely low.
I had my first bone marrow biopsy and multiple periods of blood monitoring. Initially, I was under the care of an oncologist who suspected myelodysplasia, a type of cancer that affects bone marrow. This was later re-diagnosed as severe chronic neutropenia of unknown cause.
The cause of my long-term neutropenia has since been updated to Autoimmune neutropenia, and specialist oversight has included an immunologist, neurologist, and regular management by a hematologist as the main specialist.
Living with a long-term chronic illness is something that evolves with your medicine and science.
The first ten years from diagnosis, before G-CSF injections, I was admitted to the hospital multiple times due to infections, which could be life-threatening and sudden infections were treated with IV antibiotics in between getting on with a relatively ordinary life with a lop-sided immune system.
In 2016, my health declined, infections were more severe, I was increasingly tired, sleeping before and after work, constant sores that didn’t heal, and a simple cut while gardening or a cat scratch would lead to hospitalisation.
Compromised immunity led to my taking 12 months of unpaid leave from work in 2016. I started a trial through our local Cancer Care Centre of G-CSF 300mg injections three times a week,
This treatment option has helped me in huge ways, preventing serious infection and reduction of antibiotics and hospital admissions.
I have continued to proactively manage neutropenia with G-CSF 300mg 1-2 injections weekly, through specialist oversight that is available in Australia through outpatient care.
The Professor Haematologist who leads the care I receive since the trial of G-CSF, I greatly appreciate for the frank, practical approach they bring.
Drum roll of the not easy part of managing neutropenia, you can’t sugarcoat the reality of pain that comes with chronic neutropenia; the side effects from G-CSF, in part, contribute to extreme bone pain due to rapid bone marrow expansion as the G-CSF boosts white blood cells, and swelling in organs that, for me, can coincide with G-CSF injections.
I’ve experienced bone mineral loss osteoporosis, including in my jaw bone that was picked up and managed by a dentist to be proactive in preventing further bone loss in the jaw and helped highlight bone density loss and risks that were picked up from a dental X-ray.
Monitoring neutropenia is a long-term game, including regular full blood counts, GP and specialist visits, bone marrow biopsy every few years, and bone scans.
This is the life I lean right into. I have two beautiful children, a husband I cherish, long-term friends who have been a huge source of support, a rock star-loving family, dogs, a garden, and plants in every corner of sunlight in our home.
I have a meaningful career working in non-profit community services, and without all the major plot twists of life, I don’t think I would attend to life in the same way.
A big shout out to The National Neutropenia Network, I found the network early on and continue to appreciate the important resources, stories and connections that flow all the way to me here in the Blue Mountains, Australia.
Update: 10.7.26