My life and health in the last 5 weeks has been tumultuous.
I’ve never been in that much pain before. It was enough pain to ready my mind for death.
I was fighting a staph infection in the blood, yet my immune system was completely zapped. I had almost zero white blood cell and neutrophil count.
The Doctors knew this was serious.
Being admitted to the hospital with no immune system was risky, as the hospital is infested with so many germs from sick patients.
But they couldn’t send me home because I had a staph infection that was not responding to any antibiotics.
Finally, my body began to respond to the 5th antibiotic, Cefazolin, delivered via PICC line (peripheral inserted central catheter).
I was to be on this antibiotic every 8 hours, 3x day for 4 weeks!
The hardest part was not knowing what was happening to my body.
While waiting for the results of the bone marrow biopsy, my mind was full of fear about leukemia, lymphoma, and aplastic anemia.
These are all serious conditions that would alter my life as I know it.
My mind didn’t absorb all that was happening. In truth, it’s still not done processing everything I went through.
I was discharged from the hospital on 5/24/2019 after 9 days of hospital stay.
Thankfully, the best case scenario happened in regards to my health. My bone marrow is recuperating fast.
My bone marrow was reacting to Plaquenil. After 19 years of taking the medication on and off, it had finally shut my bone marrow off.
As soon as my new Rheumatologist removed Plaquenil from my regimen, my immune system began to recover.
My new Rheumatologist called me yesterday to let me know that my labs from Monday, 6/3/2019, showed almost normal white blood cell and neutrophil count with no Lupus flare based on my serology.
Then, I reviewed my labs from 5/8/2019, when my old Rheumatologist dismissed my labs, said I was having a minor Lupus flare, and sent me home with a tapering dose of prednisone.
I remember being so sick in his office, trying to show him my rash and tell him how awful I felt. I told him it didn’t feel like it was a normal Lupus flare.
He was in a rush and was anxious to get me out of his office.
The labs from early May also showed declining white blood cells, neutrophils, and fast declining platelets. This is indicative of what is known as pancytopenia.
He assured me I was just in a flare and to make sure to take my Plaquenil and be diligent about my Benlysta injections.
Then finally on May 15, when my fever kept spiking even with the week’s worth of prednisone, he encouraged me to go to the hospital. This is when they found that my bone marrow was wiped out.
When I was hospitalized, I met the new Rheumatologist who researched and suspected Plaquenil to be the root cause.
He’s the one who removed Plaquenil from my daily regimen and that’s when my white count began to rise.
I was discharged on 5/24/2019, the Friday before Memorial Day weekend.
I then was able to work three full work days seeing my patients and then go off to Asheville for advanced training in Ayurvedic Medicine.
My labs continue to improve but I have one more week of antibiotic therapy.
My PICC line will be removed 6/12/2019 and I can resume my normal life without the PICC line.
Be Your Own Doctor First
I am so thankful for my recovery and I hope to share more inspiration with you.
In retrospect there’s so much to be gained from my experience.
I know I was stressed to the max with work life balance prior to this episode, and I can’t tell you how much we all take health for granted.
Thank you for being on this journey with me. I will be sharing more concrete research on the implications of pancytopenia and Plaquenil.
While Lupus was the suspect for all my ailments, it turned out it wasn’t Lupus at all.
The take home lesson is to always trust your instinct and when in doubt, speak up and seek a second, third, or fourth opinion.
No one Doctor can possibly know the nuances of what you may be experiencing.
Lupus is bizarre. Due to the physiological changes and the effect of the meds that I’ve been on, I feel it’s in our best interest to be proactive about our health.
Thanks so much for all your encouragements and I will see you soon.