From Confusing Symptoms to Motherhood and Advocacy: Taja’s Polycythemia Vera Story
Living with polycythemia vera, a rare myeloproliferative neoplasm, changed Taja’s path entirely. She was diagnosed in 2015 after fainting spells and abnormal lab results. For months, doctors dismissed her concerns, telling her she was too young for cancer. By tracking her own labs and bringing them to a clinical director, she finally received the correct diagnosis.
Interviewed by: Ruth Fein Revell
Edited by: Katrina Villareal
At the same time, Taja was caring for her grandmother with pancreatic cancer. Experiencing illness both as a patient and a caregiver shaped her belief that gratitude reveals hidden beauty, even during pain and uncertainty.
When told she could not safely become pregnant, Taja and her husband sought specialists and pursued IVF (in vitro fertilization) during the COVID pandemic. Their efforts succeeded and they welcomed their daughter, Miracle. Afterward, her disease accelerated and she underwent a bone marrow transplant with her father as the donor.
Though the transplant caused ongoing side effects, Taja chooses to use her voice through Miracle Circle Hands, an advocacy group that supports people with invisible illnesses. Her hope is to show that even in hardship, life can still offer light and connection.
Key Story Takeaways
- Self-advocacy can be life-saving when symptoms are overlooked or dismissed.
- Gratitude became Taja’s core practice, helping her find meaning through illness.
- IVF gave her and her husband the chance to welcome their daughter, Miracle, despite doubts from doctors.
- The bone marrow transplant brought difficult side effects but also a path forward.
- Taja transformed her experience into advocacy, creating support networks for others with invisible illnesses.
- Name: Taja S.
- Age at Diagnosis:
- 23
- Diagnosis:
- Polycythemia Vera (PV)
- Symptoms:
- Chronic fatigue
- Fainting
- Stroke-like episodes
- Elevated hemoglobin, hematocrit, and platelet count
- Treatments:
- Emergency surgery for ruptured cyst & bowel obstruction
- Chemotherapy
- Radiation
- Bone marrow transplant
Thank you to PharmaEssentia for supporting our independent patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- How My Loved Ones Would Describe Me
- When I First Knew Something Was Wrong
- The Moment Everything Changed
- How I Balanced Caring for Myself and Others
- I Was Told I Was Too Young to Have Cancer
- I Decided to Move Forward with IVF
- My Pregnancy Was Difficult
- Where I Find Support
- Why I Decided to Move Forward with a Transplant
- How the Transplant Has Impacted My Life
- How I’m Helping Others
- My Message of Hope
How My Loved Ones Would Describe Me
My name is Taja. I was diagnosed with a myeloproliferative neoplasm (MPN) called polycythemia vera in 2015, which eventually required a bone marrow transplant. I am happy to share my story.
Friends and family describe me as compassionate, caring, and someone with a giving heart. I am very concerned about others, often less about myself. I’m definitely a people person focused on changing the world or its outcome.
When I First Knew Something Was Wrong
During my junior year of college, while working full-time and going to school full-time, I began feeling off. After multiple visits to emergency room doctors, primary care doctors, and a GI specialist (gastroenterologist), the only doctor truly alarmed by my lab work was my GI doctor, who flagged my elevated red blood cells, hemoglobin, hematocrit, and platelet count. Despite these warning signs, my primary care doctor dismissed my concerns and put me on antibiotics, claiming it was probably an infection due to my age.
The Moment Everything Changed
After blacking out behind the wheel, which resulted in a car accident, I took it upon myself to research my chart and labs, and track my numbers as they kept rising. Ultimately, I presented these findings to the clinical director at work, which led to further testing. A week later, on February 14, 2015, I was diagnosed with polycythemia vera.
The more grateful your heart, the more beauty you see. I use that every day.
How I Balanced Caring for Myself and Others
Around the time of my diagnosis, my grandmother was also diagnosed with pancreatic cancer. Caring for her and not understanding her prognosis made me realize how different it is to care for loved ones during illness. I overextended myself to support her, especially when family support felt lacking.
I Was Told I Was Too Young to Have Cancer
Being young, I was frequently dismissed by medical professionals, even when experiencing severe symptoms, such as passing out at home and potential signs of a stroke. In the hospital, instead of seeking answers, they suspected drug use. This lack of understanding extended to my family, who were also uneducated about my condition.
Doctors do not have the last say. Only God does.
I Decided to Move Forward with IVF
I was told pregnancy was not an option. Both my OB and hematologist were unfamiliar with the disease because of limited research available. Despite discouragement, my husband and I sought specialists and ultimately went through IVF during the COVID pandemic. Against the odds, we succeeded on the first try.
My Pregnancy Was Difficult
During my pregnancy, my condition went dormant and my lab numbers normalized. However, I faced a crisis at six weeks postpartum with a ruptured cyst and bowel obstruction, requiring emergency surgery. Thankfully, my daughter Miracle and I came through safely.
Where I Find Support
My husband has been my advocate and support, stepping in where family and friends could not. His unwavering devotion has carried me through the bone marrow transplant and ongoing struggles.
Why I Decided to Move Forward with a Transplant
After Miracle’s birth, my disease spiraled. My platelets remained critically high despite aggressive treatments. Transplant was the only option. Facing the difficulty of finding a donor as a woman of color, my father became my half-match (haploidentical) donor.
You really shouldn’t be here. The things you’ve been up against…it’s pretty phenomenal.
How the Transplant Has Impacted My Life
The transplant threw my body into menopause. I now struggle with graft versus host disease (GvHD), chronic pain from avascular necrosis (or osteonecrosis), and lingering effects from COVID. Emotional and mental health challenges have been profound.
How I’m Helping Others
I had to go on full disability and have not returned to work. Creating organizations and advocacy is my way to fulfill my purpose and help others feel seen and heard. Drawing on my experiences, I started Miracle Circle Hands to advocate for those with invisible diseases and seniors. The organization connects resources and builds supportive networks.
I am forever grateful that I was able to have the transplant. I am here to speak to you, but it’s definitely stressful.
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Thank you to PharmaEssentia for supporting our independent patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
More Polycythemia Vera Stories
Taja S., Polycythemia Vera
Symptoms: Chronic fatigue, fainting, stroke-like episodes, elevated hemoglobin, hematocrit, and platelet count
Treatments: Emergency surgery for ruptured cyst & bowel obstruction, chemotherapy, radiation, bone marrow transplant
Jeremy S., Polycythemia Vera
Jeremy Smith and Dr. Angela Fleischman share empowering insights on living well with polycythemia vera, from symptoms to treatment and patient advocacy.
Todd S., Polycythemia Vera
Symptoms: None, discovered during a routine physical that uncovered extremely high blood counts
Treatments: Phlebotomy, aspirin
Nick N., Polycythemia Vera
Symptoms: None, caught at routine physical
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