Episode 156: Diagnosed with PKD at 10 | Living with Hereditary Kidney Disease (CKD Story)
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Natasha Brown shares her powerful and deeply personal journey of living with polycystic kidney disease (PKD), a hereditary condition diagnosed at age 10. Her story spans generations, with multiple family members affected, and reveals the emotional and physical toll of a lifelong illness that remained symptom-free in childhood despite progressive cyst growth. The turning point came in her 30s during pregnancy, when high blood pressure emerged, followed by a rapid decline in kidney function after relocating to Panama—despite a healthy lifestyle. This led to a double nephrectomy and prolonged dialysis in South Africa, where she faced systemic barriers to transplant due to expat status and was ultimately placed on a cadaver list. After a pivotal decision to leave South Africa and relocate to the UK—where polycystic liver disease is not transplanted unless function is impaired—she regained control of her health journey. She was placed on the transplant list, managed home dialysis, worked part-time and then full-time, and eventually received a kidney transplant in October 2023. Her recovery was marked by complications, but her resilience, faith, and focus on what she could control enabled her to thrive. Natasha’s message centers on grit, self-advocacy, and the power of small daily goals in overcoming adversity.
PKD can remain asymptomatic for decades, making early diagnosis and family screening critical.
Living with chronic kidney disease requires proactive lifestyle management, even when symptoms are absent.
Transplant eligibility and access vary significantly by country—expats face major barriers in many nations.
Home dialysis can enable a full life, including work, family, and travel, despite the challenges.
Post-transplant recovery is a long, complex journey requiring patience, physical fitness, and mental resilience.
…and 3 more takeaways available in PodZeus
Diagnosis at 10: A Family Legacy of PKD
“I was diagnosed at the age of 10 with PKD, polycystic kidney disease. So my great-grandmother, my grandfather, my mother, her brother, and then their children were all diagnosed at some point, and I was diagnosed at the age of 10.”
The Silent Progression: From Active Child to Hidden Illness
Natasha recounts how PKD remained undetected in her early life despite her high level of physical activity, including national-level gymnastics. The disease only began to impact her in her 30s, when pregnancy triggered severe hypertension and revealed the true progression of her condition.
The Rapid Decline in Panama and the Reality of Transplant Barriers
“I cannot tell you why, but my kidney function started plummeting literally from month to month to the point where like just over a year into my stay in Panama, my medical team in South Africa and my nephrologist in Panama City said, it's time for you to go back to South Africa. The time is now.”
Double Nephrectomy, Dialysis, and the Emotional Toll of Waiting
“I started my dialysis regime three days a week, four hours at a time. That's sort of standard. But my fluid restriction was obviously a lot higher than someone that still urinates a little bit because a lot of kidney patients are on dialysis but they've got the bladder so they still urinate a little bit so the fluid restriction isn't so high. Mine was 750 mils a day which is almost nothing.”
Self-Advocacy and the Decision to Move to the UK
“I was not comfortable with the fact that they want to transplant the liver. And I'll tell you why. My mother and my uncle both have polycystic liver disease. Now, other than with kidneys, the same cysts on a liver does not affect its function. It's fully functional.”
“Keep on keeping on. I think soldier on. That's what we need to do. Get through every day. I can tell you that my days were not easy. Most of them were not easy. You know, on dialysis, as you know, Dee, you don't feel well all the time. There were many mornings I woke up and I felt dreadful, but I had to get through the day.”
“I was able to live a full life. I was able to travel. I've traveled to Wales. I've traveled to Cornwall on holiday with my machine. I've been able to do a lot of things, go to music concerts. while on dialysis, while working, while looking after my family and while exercising.”
“I was diagnosed at the age of 10 with PKD, polycystic kidney disease. So my great-grandmother, my grandfather, my mother, her brother, and then their children were all diagnosed at some point, and I was diagnosed at the age of 10.”
Host
Guest
Natasha Brown
person
Dee Moore
person
polycystic kidney disease
other
United Kingdom
place
South Africa
place
Panama
place
polycystic liver disease
other
double nephrectomy
other
home dialysis
other
cadaver list
other
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