Let’s start with the good news. Those big events you are afraid you are going to miss, I’m here to tell you that you can be there and participate in all of them. After your diagnosis, life can be “normal” and, with a little luck, extraordinary.
In my late twenties, I began to get sick often. In my early thirties I was dealing with some sort of illness and fatigue most of the time. My husband and I were raising two young children, and I was just so tired. In 1996, I was hospitalized with strep and mononucleosis, and that was the first time that G-CSF was used successfully to help me fight an infection.
After the hospitalization, we began to search in earnest for an answer for my symptoms. Over the next couple of years we met with several experts who ordered bone marrow biopsies and countless blood tests looking for answers. Like many of you, we were given a variety of misdiagnosis, the worst of which was terminal cancer. Finally a hematologist gave us a diagnosis of a chronic blood condition.
I remember being grateful that we finally had a diagnosis because then we were able to look for a solution. With the help of the internet we found the SCN Registry. Our family doctor, in conjunction with Audrey Anna Bolyard, was so helpful in facilitating my admission into the SCN Registry. I was accepted into the Registry in 1998 and, shortly afterwards, began taking Neupogen. Once I became a member of the Registry and had consistent treatment, my physical health began to improve very gradually.
With Neutropenia we can measure improvements in health by looking at lab reports. After determining the correct dosage of G-CSF and stabilizing my absolute neutrophil count (ANC), my ability to fight off infection improved as did my health. However, my physical health was only part of the picture.
For a long time after I began to heal physically I still worried about dying young. Even though this is a legitimate concern, I don’t think that people talk about this part of our illness. Although I did not seek mental health services, I support anyone who does.
Over time, I believe that a combination of things helped improve my mental health. A couple of months after I began taking G-CSF I started running. Whether it is the endorphins or the time outside there were a lot of positive feelings that came from that physical exertion. In addition our school was looking for someone to start a SCRIP program. Volunteering kept me busy and focused on doing things for others which gave me less time to think about my own issues. Finally, it may seem cliché but never underestimate the power of prayer. I have been blessed with a faith in God and am part of a strong prayer community.
Thanks in part to the Registry I have been able to live a normal life. Throughout this journey I have been blessed with a supportive husband and family. Together we have witnessed our children’s graduations from high school and college. We have danced at both of our children’s weddings and in the last year we have become grandparents. Twenty some years after beginning treatment I have been privileged to celebrate some extraordinary family milestones.
My diagnosis was not an ending – and neither is yours.
Comments:
- Karen continues to manage her health with daily doses of Neupogen. An avid runner, she focuses on eating healthy as well as getting plenty of rest.
- Karen’s ANC’s typically fall in the 2100 – 2400 range. She does not typically experience bone pain but does experience chronic fatigue.
- Karen owns and operates a small business designing websites, managing social media and designing printed materials. As mentioned in her essay, Karen has a very solid support network which she believes makes all the difference in the world.
- A diagnosis of Neutropenia has allowed Karen to be grateful every day.
