My name is Jacqueline and I have neutropenia, a rare blood disease where my body doesn’t make enough or destroys some of my white blood cells. It was found at my annual physical. My routine bloodwork showed a neutrophil count of .3. My doctor is still trying to figure out the root cause. The blood cells I lack are the body’s defense against infections. As a result, I can get an infection that could hospitalize me or even cause death. The crazy part is that I look fine and feel fine, except for fatigue. This is incredibly scary! Coping with this new reality is a daily struggle for me.
The things I think about daily are…
- Should I shake that person’s hand? They might be sick! Do I explain to them that I can’t shake hands because it is a potential way to get sick? The latter leaves me feeling like a freak or rude.
- Is it okay to hug them, what if they are getting sick? If I don’t, then I am freak or rude for sure!
- How close it too close to talk to someone?
- Elevators, no way! Way too risky!
- Kids are adorable but really dangerous! Keep a safe distance.
- Should I pull that weed without gloves? They have told me not to!
- I need to wash my hands!
- Don’t touch your face!
- Don’t touch the handrails!
I have a hematologist/oncologist who does labs once a month, used to be once a week so once a month feels more normal but still not normal at all. My doctor is at the Mountain States Tumor Institute which is a cancer treatment center, but I don’t have cancer, thankfully. What I do have is a rare blood disorder that cannot be seen or felt by me. This is good and bad! I am thankful that I feel well, but at the same time frustrated because I don’t really know when I am at risk of getting an infection. Any fever over 100.5 is a life threatening emergency. I have been told that I am to go to the emergency room if that happens.
Two of the most helpful resources I found at this point in my journey are the National Neutropenia Network and the Severe Chronic Neutropenia International Registry. They both have provided a wealth of information and resources that have been immensely helpful. I applied and became a member of the registry in June of 2016.
2017-The year began uneventfully and everything seemed to be going well until I had a routine procedure and developed an abscess. It wasn’t hot or red, just painful. It did not look infected at all, but it was! I was put on antibiotics and it was removed. Meanwhile, I have concurrent spondyloarthritis and my rheumatologist wanted to start me on a immune system suppressing biologic. Super scary because infection is a risk. I called the registry and they counseled me to consider daily Neupogen injections to keep me safer while on the biologic drug.
I began taking Neupogen daily in September of 2017 and it works beautifully for me! I am so thankful that there is an option for treatment that works. I decided not to start the biologic at that time because I was still terrified it would crash my immune system.
After suffering in pain from my spondyloarthritis for over a year, I decided give to the biologic a try. With fear and trepidation I began in May of 2019. We did increase the Neupogen to compensate for the potential crash. It is now September 2019 and I have never felt better and my bloodwork is almost normal. My neutropenia and spondyloarthritis are both effectively treated and I am so thankful.
Having a rare disease has been a challenging and rewarding experience that has giving me the opportunity to meet some amazing people. It has taught me to never stop learning! I have an amazing team of doctors that have worked hard to help me life the safest best life possible.
