Aja Best, from the US, shares her journey with Chronic Kidney Disease (CKD), starting with a diagnosis of IgA nephropathy following a high-risk pregnancy. After a period of denial, she began dialysis in 2018 while actively seeking a transplant. Despite setbacks, she received a life-saving transplant in 2020 after 44 potential donors were evaluated. Now dedicated to patient advocacy, Aja shares her story to raise awareness and inspire others facing similar challenges with CKD.
Background
In 2015 during my pregnancy and at the age of 30, routine tests revealed an abnormal amount of protein in my urine, indicating potential kidney issues. Despite this early warning, a definitive diagnosis was not possible until I was without child. I chose to continue the pregnancy despite medical advice to consider abortion for my safety due to risk factors and my post-pregnancy hypertension. I eventually was diagnosed with preeclampsia and was considered a high-risk pregnancy through to childbirth.
Childbirth and Diagnosis
A routine hospital visit for a hypertensive 4 day long headache turned into an emergency C-section. My child was born and placed into the neonatal intensive care unit for 3 weeks. Happily and luckily, she is healthy and thriving today at 8 years old. Six weeks postpartum I am back at the very hospital I delivered her, in between breast feedings for a proper biopsy to determine the root cause of the my suspected kidney issues. I was diagnosed with IgA nephropathy (IgAN), a rare autoimmune disease, that typically does not rapidly progress to stage five of chronic kidney disease (CKD). The diagnosis was a shock to say the least. Despite the warning signs, I did not fully comprehend the severity of my condition.
Progression and Denial
Throughout 2016, my kidney health declined. I did not follow up adequately, partly due to denial and a lack of understanding of the disease’s seriousness.
| There is also an invisibility mindset that often is subscribed to by young people (relatively young, in my case). | In late 2017, I was referred to a nephrologist who informed me that I would need dialysis or a transplant within a year. Initially, I continued in a state of denial, focusing on my work and responsibilities as a new mother. |
Realization and Action
By mid-2018, I began actively seeking a transplant to avoid dialysis, expediting the typical yearlong qualifying process into five and a half months through personal research and advocacy. I coordinated my care and moved from New York City to San Diego, preparing for the transplant. However, due to an oversight on the clinical team in the evaluation of my donor to be, my scheduled surgery was canceled, leading to a period of personal hopelessness and despair.
Dialysis
Due to severe illness and critical health markers, I was forced to begin dialysis urgently to save my life. Despite my reluctance, I underwent a chest catheter placement and later two peritoneal dialysis catheter surgeries, attempting to maintain productivity as a guise and coping mechanism to hang onto a small shred of my identity.
Transplant Journey
Over 44 people volunteered as potential donors, leading to health discoveries and increased awareness among them. Nonetheless, none were approved to donate. Eventually, a woman who had planned to donate to another person chose to donate to me instead due to her previous recipient getting a better match. I received my transplant in November 2020, almost two years after starting dialysis. The transplant significantly improved my quality of life, though it required lifestyle adjustments and ongoing medical vigilance.
Conclusion
My CKD journey has been challenging but also transformative. The generosity of my donor and the support of my community have been invaluable. While there is still much to improve in kidney care, I am grateful for the opportunity to live a better quality of life and am committed to supporting others in similar situations. This experience underscores the importance of continued advancements and increased access to transplantation.
Personal Reflection
The emotional and physical toll of dialysis, the impact on personal relationships, and the loss of identity were significant challenges. I describe this experience as going through your own death because you will never be who you were before. However, the experience also brought a deeper appreciation for life and the importance of patient advocacy. I continue in efforts to improve kidney care on the patient advocacy committee for the National Kidney Foundation (NKF), volunteering with renal non-profits like the Transplant Games and participated on my first panel at the NKF’s annual SCM in Spring 2024.
Through sharing my story and continuing to participate in patient advocacy across multiple organizations associated with improving renal care, I aim to provide insight, education and support to others navigating similar journeys.
Disclaimer: The blog series is intended for informational purposes only and is not meant to endorse or promote any specific drug, product, or brand. Each individual’s experience is unique and should not be construed as medical advice or a guarantee of similar results for others. Always consult a qualified healthcare professional before making any decisions regarding your health and well-being.
