There have been numerous times throughout my PKD journey when I have been in a medical facility, such as the emergency room, and have had to explain what polycystic kidney disease is to a staff member. On several occasions, while providing my health history and informing the medical staff that I had a kidney transplant, they have responded, “So you received two kidneys?” I informed them that a kidney transplant recipient only receives one kidney. I am puzzled by the lack of knowledge of PKD. Why is it that not many people know what PKD is, in spite of the fact it is one of the most common, life-threatening genetic diseases?
I was diagnosed when I was 10 years old and it was not until my early 20’s that I knew there were so many others living with this same ailment. I do not want other PKD patients to live that long feeling, alone, while battling this disease. I want the world to know the powerful truths of how ugly and devastating PKD is. How so many of us have lost loved ones because of PKD and have supported loved ones while they fought and continue to fight this disease. How we have a 50% chance of passing PKD on to our children. I would like people to know there is no cure for PKD. That dialysis and transplant are the only treatment options. I want others to see how resilient PKD survivors are and determined to find a treatment.
I have shared my PKD voyage at more than 80 public events. I use social media: Facebook, Twitter, Instagram, and this blog to educate and inspire others. I drive around with a license plate that reads: END PKD. My email is pkdwillnotbeatme. I use this email address, so that every time I must provide it to someone, I am raising awareness. My mission and passion is to do all I can for the vital cause of PKD awareness and have others join me in saying, “PKD Will Not Beat Me!” I know it seems frustrating at times, wondering if our voice is heard. I believe it is. As more of our PKD family joins together, our voices will be heard even louder and clearer.
“No matter what people tell you, words and ideas can change the world.” – Robin Williams
Thursday, September 4th is #PKDAwarenessDay. A day for us to use our individual voices and let the world know how important our disease is. Everyone has different comfort levels when it comes to talking about PKD. Tomorrow we can “Give PKD a Voice,” “Share the Facts,” and/or “Take Action.” Please visit pkdcure.org/awarenessday to learn more. Feel free to raise awareness in your own unique way, whatever inspires you. There is not just one single way to raise awareness. We can do it a multitude of creative ways – sharing our story, posting a video, doing a challenge, etc. Have fun with it!
Every day is a good day to spread awareness! With the NFL football season kicking off as well on Sept. 4, let’s ‘punt’ PKD to the curb as we spread PKD awareness.
What ideas do you have to share and/or what do you plan on doing to raise awareness of PKD on Sept. 4?
we will promote all PKD events since I suffer from ADPKD and so does my mother
Hi Marisa & Mariah,
Thank you very much for your support. I wish you and your mother all the best!
I work for Celtic Marketing Food Brokers, this year we will be having our 10 annual golf tournament to benefit the PKD Foundation. During the last 9 tournaments, we have raised more than $100,000. We will promote awareness this year on October 9 in St. Johnsbury, VT. Celtic Marketing is owned by my brother Dan. My son and I both have ADPKD.
Hi Marian,
Wow, this is fantastic! Thank you very much for all of your hard work to raise awareness and funds for PKD. I hope you and your son are doing well! Good luck at your upcoming event!
I will be walking to support my daughter at the end of September! I organize a team every year to raise money and walk. This year we sold shirts and I am holding a sale on my fb page. I am selling “teal” headbands for 6$ and all 6$ goes to the PKD Foundation. <3 Hoping to do even more next year.
#forHaylie #HayliesHunters
Hi Shauna,
Thank you so much for sharing. This is wonderful! Your support, participation and fundraising is commendable and greatly appreciated. All the best to your family!
Love this! I too am starting to be more proactive about raising awareness! We need to educate people. Waiting for my t-shirt to arrive! End pkd!
Thank you for helping to raise awareness! I agree that we need to educate! I hope your t-shirt arrives soon. Wear it proudly as we work towards ending PKD. Take care.
I was diagnosed with PKD when I was 25. In 2009 I had my first nephrectomy. I was on dialysis for two years and received a kidney in 2011 from a stranger. My kidney was part of the Living Donor Paired exchange program. In the fall of that year I had the last kidney removed. Both of them were enlarged and close to 8lb each. I would not be alive were it not for the many supportive people trying to help with this disease. The lack of knowledge regarding PKD and anti rejection meds with in the medical system is appalling. Educating hospital staff and family physicians needs to happen. We are silent in our suffering mostly because we focus on the positive and staying alive. Any chance I get I try to educate. Now I am facing a probable liver transplant as my liver is full of cysts too. No …I will not be dismissed as ‘having suffered enough’ as I too want to live and be happy celebrating LIFE with my family and loved ones. We are not contagious nor are we pretending. We did not become this way through any fault of our own. We were born this way. Please support in any way you know how. Thanks with gratefulness …Jaime Seward
Hi Jaime,
Thank you very much for sharing your courageous battle with PKD. You are a warrior with a beautiful spirit. I am sorry for all that you have endured due to PKD. No, we are not contagious, but I believe others would agree with me that your positive attitude is. 🙂 Wishing you all the best on your PKD journey!
I just came across this post, but felt compelled to reply…in 2017. It’s been three years since you write this, yet the lack of knowledge within the medical community, is still a joke! I was just released from the hospital my third bout with sepsis, all PKD related. I was faced with quite a few nurses and doctors who didn’t have a clue what this disease was or why it was it that if I had a kidney disease, why was it that my liver was causing my sepsis. Lol Thank you for your words, it made me feel so not alone.
Hi Laura,
I’m happy that you read this post three years after it was published and that you commented on it. Thank you for expressing your thoughts and frustration. It is difficult enough to deal with our health issues, let alone having to explain them to the people caring for us. I’m so sorry that you had to go through this too. I often get asked if I received one or two kidneys? Then I proceed to explain that you only receive one kidney when you get a transplant. Also, many people don’t know what PKD is. This is why I am passionate about sharing my story and educating others on PKD!
I just responded to your other comment about sepsis and am curious what caused your sepsis. I see in this comment that you mention your liver. Would love to hear more if you are willing to share.
One of my goals of writing is so that others don’t feel alone, so thank you very much for expressing that this helped you to not feel alone. It means a lot! Hugs!
Great blog with positive insights from another PKD patient is appreciated. I wonder how long everyone else waited for their transplant. I have been on the list for 4 years and 9 months. Trying to think positive and most days I do. I always wondered why we don’t have local support & meeting areas.
Hi Brenda,
I am glad you enjoy my blog. I was too sick to be placed on a waiting list but needed a kidney to survive. I was fortunate to have a living donor. Glad to hear your spirit remains positive through all of the waiting. I will put this on my topic list for a future blog and hopefully can get some feedback on how long people have waited or are waiting for their transplant and any insight they can provide. Are you looking for local PKD support groups? Where do you live? I hope you don’t have to wait much longer. Take care.
I was diagnosed with PKD when I was 20. In 2011 I met with the transplant surgeon for the first time and he told me if I wanted to have a transplant I needed to lose weight. So that is what I set out to do. After a year and a half of walking and working out I lost 60 pounds and decided to start running. At 21% I ran my first half marathon and it was awesome. I have inspired other family members who also have PKD that this disease doesn’t have to control you. I began dialysis 2.5 months ago, training for my first 25k trail run this October and I am feeling great!
Hi James,
Wow! This is amazing and fantastic! Congratulations on taking control of your health, PKD and your life. Your accomplishments are impressive. With your strong spirit and determination, you can do anything. I hope you receive the gift of life very soon. Thank you for sharing your strength with all of us. Good luck on your next trail run. We’re cheering you on.
Glad to have found your blog and I’ve enjoyed reading through your posts.
When my father passed earlier this year, we requested donations be made to the PKD Foundation.
It was a special blessing to know that awareness was being raised to help other families affected by the disease.
You should be very proud of all that you have and are continuing to do to raise awareness. Thank you!
Hi Casey,
Thank you for your thoughtful words of support and encouragement. I am thankful to hear that you enjoy my blog. I am very sorry that your father passed earlier this year. I hope the health of you and your family is well. I appreciate you reaching out and for your kind sentiments.
My granddaughter Ada May was born January 16 2014 with ARPKD. I started looking for information about this disease and was surprised at the lack of knowledge and information. Ada passed away August 1st at Boston Children’s Hospital but not before she had both kidneys removed and suffered a stroke from low blood pressure. I feel she had a purpose even if it was just to let our family become aware of this terrible disease. September 20 th there is a walk in Boston for PKD, Ada’s sister and I are trying to get team together to walk in Ada’s honor…I have suffered two heart attacks since January 16 but I am really going to try and get there to walk for our little angel.
Dear Kathy,
My heart aches for you and your family. It is devastating what dear Ada May endured and how short of time she lived. Families like yours are why I continue to do my best in raising awareness of PKD. Thank you for sharing your story. I admire your positivity and courage through all of this. I hope meeting kindred spirits at the Boston walk will provide a source of comfort. I am sorry to hear of your recent heart attacks. Please remember to take good care of yourself through all of this. Sending love to you, your family and dear sweet Ada May.
Stay positive is what I hear a lot. I don’t want to be the bad guy but somebody has to say that a lot of money has been donated and raised in attempt to fight this disease, but nobody asks where the money goes. I think you would all be surprised the actual percentage going into research, research highly mechanical and circular and going nowhere fast. When minerals found on Easter island are guiding your chemical inquiries, for instance, you should start to ask questions.
Here I am end stage PKD with kidneys the size of pineapples set to begin a dialysis that after 12 hours of treatment will clean my blood about 15-20%. My first question is, why only this amount?
So research should flow in the direction of best benefit quickest. Frankly, I don’t want to burst any bubbles, but this is a BIG BUSINESS, specialized, nearly everyone involved related in a big matrix. Soon it will be a monopoly, this business of dialysing, let’s see DaVita and…maybe Davita. Look how many people actually make dialysis machines. How many drug companies are actually working on chemical solutions. How many scientists and nephrologists are working outside the box and taking chances regarding this disease.
The answer is not many, to all those. For every dollar you earn/give, I’d bet less than ten cents ever sees anything to do with kidney failure and cyst manipulation research.
And some want to know why China’s health tourism business is booming.
I wish you the best of luck in your endeavors and the best life you can achieve with what you’ve got. I spend the time to write this to the source because, well, we inhabit the same lifeboat.