I have lived with diagnosed chronic neutropenia since 2006. The first signs were fatigue and repeated infections, where I was hospitalized due to infection spreading rapidly.
I currently manage my neutropenia through 1-2 injections of G-CSF per week. I have been on this therapy since around 2015 and it has been life changing, being able to manage my neutrophil count which sits at around 1, which for folks with chronic neutropenia is better than 0.04! I can tell when my counts are dropping as I become faint, very sleepy, and just don’t feel right. I have regular blood work as well as a bone marrow biopsy every 3-5 years. If I do not feel well, I go to hospital.
Rest, eating well, and walking are things I do to try to stay healthy. I also focus less on me and more on being a ray of light in the world through meaningful work, friends, and motherhood. I have a supportive husband, close friends, and family- all of which helps greatly. My family is supportive.
Pain can be an issue due to the side effects of G-CSF injections. Taking the injection at night helps some hat to sleep while pain is active. In addition, taking Panadol if needed since I also have arthritis to manage.
Fatigue can be an issue. I am a coffee fan, so that helps- even if just pretend! I have learnt not to try and be too perfect-just do your best. I can’t get rid of chronic neutropenia but it’s managed.
I mostly don’t talk {about my Neutropenia} too much. When I was unwell, it was harder as I was off work, sick at short notice, and it was stressful. Then, I felt really sick a great deal of the time.
It can be confusing as I look well, even when I have been very ill and in the hospital. I can look glowing with health. Explaining it to my daughter was particularly important when not well managed as it meant I needed to sleep a great deal when not working just to have enough energy.
Having neutropenia can at times make me think about death more than others especially when it wasn’t well managed I didn’t think I would live this long! Now 42.
There were times when I was close to the edge due to severe infections attacking organs. Since having G-CSF it has seriously improved my quality of life. I am working full time and engaged in my career.
I went on to have a second child in 2021 and took G-CSF throughout the pregnancy. Although I was ill and considered high risk I went to 37 weeks. I didn’t have as many fears of infection at birth as I took G-CSF on the day of birth and gave birth naturally. Both my children thus far haven’t inherited chronic neutropenia although my daughter does have an autoimmune disease.
I have learnt I thrive best when I’m sick of my own story, to be interested in the story of others. I am interested and focused on bringing support, kindness, and improvement to others.
I am at a point where I am dreaming again having another child. I feel less like I have a short time to live which means I’m thinking longer term and have plans such as making a garden and wanting to plan for the future with my family which is exciting. Now I try to manage my chronic neutropenia rather than it taking up the main stage.
