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.
Questions
- Have you heard of PKD before today?
- Will you support, share and spread awareness?
- Are you signed up to be an organ donor?
Gentle twist yoga sequence – 15 minute class
Viano
I had no idea of PKD till today. I’ve got to say you’re a strong person for choosing not to focus on your challenge. Not many people can do that. You don’t even look like what you’re going through. Keep being positive.
Di Hickman
Thank you! Attitude is EVERYTHING.
Khushboo
I had no idea about PKD. You have already made many people aware about it by writing in your post.
Di Hickman
Thanks, that’s my goal! Awareness!
Bethan Taylor-Swaine
Thank you so much for sharing your story and so much information about PKD. I’d never come across this condition before and given the prevalence it feels like something we should all be aware of. I’m so glad you’re at a point where things feel under control, I hope it stays like that for a very long time and that medical research comes up with real answers soon x
Di Hickman
Thanks. Yes I hope more research gets done, and we get more understanding of controlling the symptoms
Lyosha
Great article and I am now aware such condition exists, never knew about it
Di Hickman
Many people don’t know about it Lyosha!
MELANIE EDJOURIAN
It’s great that you are writing about this to help increase awareness. It doesn’t sound particularly plesant. I really hope that your mum finds a new donor. It is good that diet can help.
Di Hickman
Thanks so much! Fingers crossed she gets back on the transplant list soon!
Kristine Nicole Alessandra
I have heard about PKD before but I did not know anything about the statistics. 1 in 500 people is a lot! I know of Polycystic Ovarian Syndrome (PCOS) because my friend’s daughter has it. It must be tough living with PKD, and I do hope that medical research will be able to come up with solutions to immediately diagnose, cure, prevent or at least alleviate the symptoms.
Di Hickman
So sorry you’re friends daughter is dealing with PCOS. Hopefully we find cures for diseases soon!
Indya | The Small Adventurer
Woooooow. Whilst I personally know what it’s like to live with something that you can’t see or cure (epilepsy over here!), what you have is something else entirely! It’s *crazy* what PKD does to families, and it was truly shocking to read what your own family is going through. I always think how great it is that modern medicine has come so far, but it still has so far to go, doesn’t it?
I definitely think the rest of us who haven’t even heard of it can take one for the team and wear some teal to help raise awareness for PKD. It’s difficult with so many diseases and disorders out there that no one has heard of; I actually have a kind of epilepsy that I hadn’t even heard of before I was diagnosed with it! It’s called focal epilepsy, and my seizures are NOTHING like the kind of seizures that everyone else is used to.
I also just want to say I’m sorry for all the people who try to give to give you their opinion on what THEY think will fix it, as I know what that’s like too! Unfortunately, things are simple as diet and good sleep are *not* the perfect cure – although they can help certain sicknesses, but other ones they will have zero effect on. I know people USUALLY have good intentions, but if you don’t have the disease or disorder, or you’re NOT a doctor, you really shouldn’t be trying to be give out medical advice
I wish you and your family all the best, and hope the donors come through soon!
Di Hickman
Thanks so much! My mom also has epilepsy. Most likely due to an aneurysm she had (another effect of PKD). So I understand the epilepsy struggle. Thanks for the support.
Kemi
Wow. I’ve never heard of this before and it’s a horrible genetic ailment. I hope your mum finds a live donor soon because dialysis is crazy to experience ugh. I’m so glad you’re keeping healthy and don’t have adverse side effects and with covid, I know it must be tough to keep extra careful around people who have no concern for others or themselves regarding this.
Di Hickman
Thanks kemi. Yes I’m being more cautious about the pandemic. Fingers crossed mum finds a cadaver match.
Eric Gamble
Wow, I was and probably still am in Team 2 of the 99% who know nothing about PKD or PLD for that matter. But after reading this I kind of feel like I know a little more now. It shocks me that 1 in 500 people have this yet I know no one who probably suffers this genetic disorder. I wonder who is suffering silently. Man oh man, when I saw your list of family members who suffered this or similar kidney issues, that really blew my mind. Genetics are wonderful but their flaws can kind of suck too!
Now, I am glad you found success through diet. I have been on IF for 4 years now and have been preaching it to anyone who can hear. I got on it to maintain a lean lifestyle but and to boost my testosterone naturally while lowering my cortisol levels as I am approaching mid to late 40s. But the more I read about it and it’s effects on a cellular level the more I love it.
I wish you all the luck on your quest to live a healthy and long life and pray that one day, someone somehow finds a way to cure PKD.
Di Hickman
Thank you. Yep crazy it’s so common, but because it’s internal many suffer in silence. IF is amazing, I can’t imagine eating any other way now.
high and low blood pressure
Conditions indicative of low Mg. Some women have low levels of these antioxidants due to poor eating habits, which is common among younger women and teens.
For example, two studies presented at this year’s symposium on human health effects of fruits and
vegetables found that the addition of vegetable juice in people’s diets was a successful
strategy to help them reach the vegetable guidelines (at least
4 servings per day).
Di Hickman
Hahahaha trust me veggies is not an issue for me. I get about 14 servings a day. Unfortunately for people with kidney issues the nutrients aren’t processed in the body efficiently.