While I don’t keep it a secret that I have a genetic disease, I also don’t shout from the rooftops. However, as I find myself suffering with more symptoms of this polycystic kidney disease [PKD], I am trying to be more conscientious about spreading awareness of this silent killer. Specifically how I choose to live life with PKD.
If you’re reading this you’ll fall into one of two camps. The first, will be those like me that scour the internet for tips, research and studies about PKD. Because, you, or someone you know, has it. The second will be the person that has never heard of PKD. Don’t worry, you can join 99% of the population who are completely oblivious to it. You can find out all about it today, in the video below.
You can view and share the video from YouTube. While this isn’t the type of content I usually upload I’m asking that you help by sharing the content here today. Let’s raise awareness of PKD. Also, remember to to subscribe to my channel. New videos are uploaded every Tuesday and Friday.
What is PKD?
Polycystic Kidney Disease, or PKD, is a genetic disease causing uncontrolled growth of fluid filled cysts in and on, the kidneys. The cysts enlarge the kidneys, causing a decline in function. Eventually, leading to kidney failure.
A normal kidney is about the size of a human fist and weighs about a third of a pound. PKD kidneys can be as big as footballs, and weigh up to 30 pounds. PKD is the fourth leading cause of kidney failure.
Life with PKD means that 50 of patients will develop kidney failure by age 50. Once a person has kidney failure, dialysis or a transplant are the only options. Some facts about PKD:
- It’s the most common, life-threatening genetic disease.
- Affects more people than sickle cell anemia, cystic fibrosis, muscular dystrophy and down syndrome COMBINED.
- There is no cure for PKD
- Affects 1 in 500 people
- Thanks to research we now have a few drugs to slow the disease progression.
- PKD affects more than 600,000 Americans
- It’s a genetic disease, and can affect many people in one family
- Affects more than 12.5 million worldwide
- Parents with PKD have a 50% chance of passing it to their children
- Affects all ages, races and ethnic groups
- PKD can affect organs other than the kidneys, commonly the liver.
- Other potential issues include: mitral valve prolapse, aneurysms, hernias, diverticulitis, and diabetes
Sounds terrible? Yes, it is. What’s worse is that it’s often a silent killer disease. You don’t see the affect is has on a person. They can look completely normal. My family has been severely impacted by this disease.
My family life with PKD
Many of the memories of my grandfather, are or him on dialysis. After a while on dialysis my mother had a live donor transplant, thanks to my Dad being a match. However, transplants don’t last forever. She’s now in need of a new kidney.
My aunt has a live donor transplant. Plus, an uncle has a cadaver transplant. Currently, one of my cousins is on the transplant list waiting for a donor match. This disease wrecks families.
My life with PKD
As I already mentioned, there is no cure for PKD. Things I always followed were a healthy diet, exercise, stress reduction, low sodium, vegan diet, and keeping my blood pressure in check. Honestly until about 5 years ago I rarely suffered with any symptoms at all, other than an enlarged kidneys. Really, the only time I had symptoms was when I took a nasty bike fall and urinated blood for 3 days. Due to a burst cyst. Unfortunately though, 2019 was a doozy for my PKD!
December 26th started a 9 month period of just symptom after symptom. Primarily infections, pain, and exhaustion. I had to have multiple weeks off work due to PKD and PLD (I have cysts on my liver also). After months of conflicting answers from my health care providers I sought out new studies and research. That’s when through the PKD foundation I found research on intermittent fasting helping PKD patients. Being proactive about my own health I began intermittent fasting in September 2019 and that helped enormously with the nausea I was experiencing.
In December of 2019, I attended a webinar showing the keto diet reducing the cyst and kidney size. In January 2020, I began a vegan keto diet. Initially, I was extremely skeptical, but had nothing to lose. Since going keto, all my test markers are going in a beneficial direction. Most importantly, my kidney function increased, creatinine decreased and I haven’t had any pain. Honestly, I feel great!
Three years ago, I had to reduce my workout intensity due to proteinuria. Finally, I feel like I can start to workout again. And that is my goal moving forward. To continue intermittent fasting and keto, and increase my fitness level. It may never be where it was due to my genetic disease, but I will not give up my health without a fight.
How can you help?
The biggest way you can help is by helping to raise awareness. I mentioned above that PKD is bigger than sickle cell anemia, cystic fibrosis, muscular dystrophy and down syndrome COMBINED. Yet, you’ve most likely heard of all of those other diseases but not PKD. Right? We need to raise awareness! September 4th is PKD awareness day. Wear teal to support the cause. Post on social media and raise awareness for the cause.
Other ways you can help would be to choose to donate money to the PKD foundation to fund research. We desperately need a cure. Until then, better treatment options to help with this disease.
If you want to know more please visit PKD Foundation for more information and details on how YOU can help. We need to #ENDPKD and we can only do that with your help.
- Have you heard of PKD before today?
- Will you support, share and spread awareness?
- Are you signed up to be an organ donor?