The First Puzzle Piece

Have you ever looked back at the puzzle pieces of your life and thought to yourself, there’s my first puzzle piece, the puzzle piece that was the beginning of my story? This was the thought I had a couple of weeks ago— But not the puzzle piece I received at birth, the first puzzle piece that began my medical journey.

         From infancy to five years old, I suffered from chronic respiratory infections and I was a severe asthmatic.  My pediatrician thought this was strange, but thought my immune system was building itself up and as time went on, I would grow out of these infections and asthma.

         This was not meant to be.

         One morning when I was six years old, I woke up with excruciating pain in my knees.  They were hot to touch and I couldn’t stand on them.  Eventually later in the day, I was able to walk with a limp.  The next evening, my parents realized my condition was serious when I spiked a fever of 105.  They took me to my pediatrician and she diagnosed me with septic arthritis.  She told my parents it was imperative that I be taken to Children’s Hospital.  When arriving at Cincinnati Children’s, the first department I saw was orthopedics, who determined I needed to be referred to Rheumatology.  I was taken back to a room to be seen by this new doctor, a tall man with a white coat and black shiny hair slicked back.  He looked at my parents and said, “I’m not supposed to be here today.  I was supposed to be at a Rheumatology conference.”

         My mom looked at him and said, “Oh yes you are supposed to be here.  This visit was ordained by God.”

         Immediately in that moment, I clicked with this doctor. The cherry on top was his amazing nurse practitioner who I instantly took to as well— no one could calm my nerves before a blood draw or an IV stick like she could. On day one, he coined me with the nickname, “WW Square.” With each visit, he would put on the exam table and look over at my mom and say, “Mom, you just sit over there and be quiet, “WW,” and I need to chat for a minute.”

This specialist and his nurse had a special calling on their lives because where most children dreaded going to the doctor, I didn’t because I was going to see my buddies.

         Through many visits, procedures, and tests with my rheumatologist, it became apparent that my rheumatological issues were secondary to my immunological and hematological issues.  So many of my blood counts were out of range, therefore, I was constantly weak and lacking stamina.  Another major clue was my enlarged spleen.  It came out from my rib cage, down to my hip bone, extending over to my belly button. 

         The problem was there was no hematologist or immunologist that would keep me as their patient.   These specialists had no clue what was causing my immune disorder and they didn’t want to responsibility or liability of caring for someone they didn’t know how to treat.

         This didn’t stop my rheumatologist though.  He took the bull by the horns and managed my care despite the fact that rheumatologically my symptoms were well controlled and not that much of issue.  He had round table after round table discussions with medical experts in different fields to try to get to the bottom of what was causing my illness.  His white board was covered with possibilities and hypothesizes of what could be the culprit to my weakened immune system. His constant digging and trying new treatments kept my immune system from completely crashing. He never gave up on me and truly cared about my well-being. 

         So much so when it was time to let me go as a patient he did.

         When I was 11, the doors opened for me to be seen by immunology and hematology at Duke University.  My immunologist and hematologist at Duke stressed the urgency of my having a hematologist and immunologist to manage my case and I needed to consider transferring my care from Cincinnati Children’s to Nationwide Children’s.  As a child, I was devastated.  I didn’t like this decision at all, because I would be leaving a doctor and nurse I loved dearly, two people who made me feel so comfortable, I sometimes completely forgot I had a disease.

         But my rheumatologist saw what I couldn’t see as a child and that was the bigger picture.  While he didn’t want to lose me as a patient, he knew this would be the best move for my well-being.  I began seeing an amazing hematologist at Nationwide Children’s and a few years later, I began seeing an immunologist, who ironically came from Duke University to Nationwide Children’s. 

My immunologist is the specialist who sent my case to the National Institutes of Health, (NIH).  My head doctor at the NIH told me that despite my medical team, not being in one area or hospital and virtually having no clue what they were dealing with, all of them amazingly did everything correctly in treating me.

         A few weeks ago, I had the exciting opportunity to tag along with my friends who are seen at Cincinnati Children’s, to see my former Rheumatology nurse.  I haven’t seen or talked to her in 15 years and I haven’t been treated by her in 20 years. My rheumatologist no longer practices there, but I got to share with my nurse about my journey and the miracles I have witnessed.  After I finished sharing, she looked at me and asked if I would like for her to try to get my rheumatologist on the phone so I could talk to him.

For 10 minutes, I was able to talk to him and share with him the exciting things I’ve gotten to do and experience.  I thanked them both for their excellent care of me and what my NIH doctor told me about the excellent care I had received and that they both were included in this.

         It was then I realized and understood that my rheumatologist and his nurse were my first medical puzzle piece— they were the puzzle piece that began my story as I have walked with MAGIS Syndrome. God used them when my disease was first exposed to keep me safe and alive until I could find the right specialists who would take my case.

 I thank God He revealed this to me. I thank Him for allowing me to see the bigger picture, and above all I thank Him for my first medical puzzle piece.