My Health Journey: Navigating Treatment and Managing Side Effects
I felt compelled to share an update before my vision becomes more impaired. The past few months have been tumultuous, with my brain tumor growing again and various health complications arising. Join me as I recount my journey, straight from the diary of a chronic illness warrior.
Starting Cellcept and Its Side Effects
May 2019: I began taking Cellcept (Mycophenolate) to manage my tumor. Initially, things seemed stable, but by late September and throughout October, I experienced severe sickness. I couldn’t see, taste, smell, or even think about food without becoming nauseated. The only thing I could keep down was Jello Water, which provided necessary electrolytes.
Adjusting the Dosage: After consulting my doctors and confirming that Cellcept was causing these issues, they reduced my dosage by half while planning to transition me to a new medication. Even at a lower dose, I remained sick most of the day, though I could eat a little at night.
Birthday Setback: On my birthday, my mother made taco soup and cobbler. Unfortunately, I could only manage half the soup before my symptoms returned, making it impossible to enjoy the meal. My doctors decided to stop Cellcept entirely as they prepared to start me on a new treatment.
Jello Water Recipe
Ingredients:
- 1 package of Jello
- 1 extra cup of water
- A large cup of ice
Instructions:
- Prepare the Jello according to package instructions.
- Add an extra cup of water to the mixture.
- Pour the mixture over a large cup of ice.
- Do not refrigerate the remaining Jello water, as it will turn into Jello Jigglers, which are difficult to drink through a straw.
This simple recipe has been a family staple for managing upset stomachs and providing hydration.
Vision Issues and New Challenges
November 8, 2019: I noticed my vision becoming increasingly blurry, even with glasses. Navigating stores like Walmart became challenging and stressful.
November 9, 2019: I reached out to my medical team at Ochsner Medical in New Orleans to report my worsening vision.
November 11, 2019: I had an appointment with Amber Peskins, a neuroimmunology practitioner working closely with Dr. Bagert, my neuroimmunologist. With my father’s support, I managed to attend despite my dizziness and poor vision. Amber conducted a vision test revealing significant impairment. Following a consultation with Dr. Bagert, I was prescribed Prednisone for three days, during which my vision temporarily improved.
Managing Sodium Levels and Other Complications
Amber also ordered blood work that revealed low sodium levels, a concern given my Diabetes Insipidus (sodium imbalance). My liver enzymes were elevated, indicating potential complications that required further testing.
Updates on Diagnosis and Treatment
Diagnosis Update: Dr. Bagert and Amber suspect the tumor, identified as a rare granuloma, might be Sarcoidosis. Sarcoidosis in the brain is rare, typically affecting the lungs and heart.
Endocrinology Department Changes: I transitioned from Dr. Patel to Dr. Dendy, then Dr. Karam, and now Dr. Haque. Dr. Haque, who has followed my case from the beginning, brings expertise from the University of Virginia and the Mayo Clinic.
Upcoming MRI: On November 15, 2019, I had another MRI to assess the tumor’s status, especially given my vision changes.
New Treatment Plan: On November 14, 2019, I began a new treatment with Remicade at the Infectious Disease Clinic. The infusion process took about three hours. Remicade treats Sarcoidosis, Crohn’s Disease, and Rheumatoid Arthritis, and I might need a port due to my challenging veins.
Conclusion: Navigating life with a chronic illness involves constant adjustments and perseverance. I appreciate you following my journey and supporting me through these challenges. The lab rat life is not easy, but sharing my experiences helps me and hopefully, others going through similar struggles.
