POLYCYSTIC KIDNEY DISEASE

I have Autosomal Dominant Polycystic Kidney Disease (AKPKD)

I am one of approximately 35,000 Canadians with ADPKD, a genetic condition that occurs regardless of gender, age, race or ethnic origin and significantly impacts the lives of those affected and their families. Here, I’ll aim to provide a clear understanding of the disease, its challenges, and my need to find a living kidney donor.

ADPKD is one of the most common life-threatening genetic diseases, affecting approximately 1 in 400 to 1 in 1,000 individuals. The disease is hereditary, with parents having a 50 percent chance of passing it on to each of their children, and it does not skip a generation. 

(source: endpkd.ca)

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What is ADPKD?

Autosomal Dominant Polycystic Kidney Disease (ADPKD) is a genetic condition characterized by the growth of numerous fluid-filled sacs (cysts) in the kidneys, leading to kidney enlargement. This process gradually impairs the kidneys' ability to filter waste from the blood, ultimately resulting in kidney failure. It's important to note that while some lifestyle changes such as increased intake of water and modifications to diet sometimes help to slow the growth of the cysts, nothing can prevent or alter the course of this genetic condition.

PHOTO CREDIT: National Institute of Diabetes and Digestive and Kidney Diseases

I inherited the gene from my mother’s side of the family. Several other family members on my maternal side have also been diagnosed with either polycystic kidneys and/or liver.

Living With ADPKD: A Varied Journey

The progression of ADPKD varies from person to person. Some individuals may experience kidney failure shortly after diagnosis, while others can live symptom-free for many years, with their kidneys functioning relatively well.

Unfortunately, my kidney function is now rapidly declining and given current projections, it is likely I will need a kidney transplant before the end of 2024.

On average, around half of people with ADPKD will require treatment for kidney failure by the time they reach 60 years old. However, many patients can lead a symptom-free life for an extended period before requiring additional medical care. 

(source: nhs.uk and endpkd.ca)

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Managing ADPKD: Symptoms and Challenges

Currently, there is no cure for ADPKD. The only form of treatment focuses on managing symptoms such as chronic pain, headaches, high blood pressure, and urinary tract infections. The goal is to monitor and prevent additional complications that can occur such as development of an aneurysm in the brain, pregnancy complications, heart valve abnormalities and colon problems (diverticulosis) and slow the progression of the disease. In cases of advanced kidney disease, transplantation (and dialysis until a donation can be found) become necessary.

Preemptive Living Kidney Donation

For some individuals with ADPKD, like me, when kidney function deteriorates, a kidney transplant becomes the preferred treatment plan, offering renewed hope and a chance for a healthy future.

For patients who have end-stage kidney disease and are eligible for a kidney transplant, a kidney from a living donor is the best treatment. A kidney from a living donor usually lasts longer than a kidney from a deceased donor. A living kidney donation can reduce or even prevent the patient's need for dialysis.

(source: Canadian Blood Services - blood.ca)

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With my kidney function now below 25% I will soon be actively seeking a living kidney donation. The ideal scenario is for me to receive a new kidney before requiring dialysis. To learn more about Living Kidney Donation and why it is the preferred course of treatment click the button below.

“Thank you for becoming informed and offering hope through understanding. Your compassion and support will be the key to a new chapter in my life.”

Deep Dive: More About Polycystic Kidney Disease

If you’d like to get more information about polycystic kidney disease I invite you to watch the information video below from the PKD Foundation of Canada. With a run time of around one hour, this video provides a comprehensive picture of the disease.

DETAILS:

This webinar is an overview of polycystic kidney disease, the pathway to transplant and how the PKD Foundation of Canada can support you. This session is co-presented by the Centre for Living Organ Donation and the PKD Foundation of Canada, and will provide you with an in-depth look at the journey with polycystic kidney disease from a transplant recipient perspective, Jan Robertson, a nephrologist who specializes in PKD, Dr. Moumita Barua and the Executive Director of the PKD Foundation of Canada, Jeff Robertson.

How Can You Help?

Just the fact that you are here, becoming informed and offering hope through understanding, is greatly appreciated. If you’d like to do more, here’s a few ways you can help:

Together we can make it happen!