For many of us, we have to deal with PKD personally and also handle the emotions our loved ones endure because of the disease. My mom, at 59 years old, is the oldest to survive in our immediate family from PKD. All other family members on mom’s side of the family passed away prior to this age. I never met my grandmother. I only knew my aunt for a short amount of time. I missed out on many relationships with family members who died far too young due to PKD.
My mom recently had an appointment with her nephrologist. Her creatinine is 1.1 and kidney function is 45%. Her liver is twice the size of a normal liver. Due to her growing kidneys and liver size, she is starting to get a “PKD belly.” I’ll admit this is hard for me to accept. I am used to being the patient. It is easy for me to be the patient. It is not easy for me to imagine my mom being the patient. I am grateful for how healthy she has been thus far and hope it continues for a very long time.
It is not only what I have gone through that fuels my desire to help change the course of PKD for future generations, but the countless lives it has affected in my family and in yours.
I use my voice and story to help the PKD community so future mothers and fathers do not have to raise a daughter who suffers from all stages of PKD as I have. I raise awareness of PKD so mothers and daughters won’t have to have conversations about their health and their futures like my mom and I had just the other day. I raise awareness in hopes to pave a positive path so those in the future diagnosed with PKD will not have to undergo what my family and yours have.
My husband and parents are my core strength. Family is so important to me. I am excited that all of us will be on vacation together on #PKDAwarenessDay, which is taking place this Thursday, Sept. 3. We will all be wearing our “END PKD” t-shirts and plan to decorate our car for the occasion to help raise awareness of PKD on our traveling adventures in Arizona and Nevada. I will be posting pictures on my Facebook page. Please ‘friend’ me at Valen Cover Keefer to see photos from our awareness adventures.
There are many ways you can take part in #PKDAwarenessDay on Sept. 3. To learn how, please visit pkdfoundation.staging.wpengine.com/aware. I hope you will join me and my family and participate in this important day for the PKD community. Please help spread the word so that someday, everyone will know what PKD is. Together we will END PKD!
What do you have planned for #PKDAwarenessDay?
Hi Valen,
I’m sorry to hear about your mom’s progression and that darn belly (I have one of those myself!). She must be a kind and gentle soul and you grew up just like her, too:)
I hope you and your family enjoy this vacation and have fun together.
Thank you for sharing and promoting awareness. Too many people still didn’t know about PKD Awareness Day or even anything about PKD.
Stay well:)
Hi Karin,
I’m sorry that you have a ‘PKD belly’ too. Thank you for your kind words about me and my mom. 🙂 It was so wonderful to be on vacation with family and we had a great time raising awareness of PKD. We even got a random TV interview while on our travels from Sedona to Vegas. It was so fun! Here’s a link to the news coverage: http://www.lasvegasnow.com/news/woman-spreads-word-about-kidney-disease Hope you had a great PKD Awareness Day and holiday weekend! Hugs!
Hello group, this is my first time viewing this site it is nice to know that so many of us chose not to give up, and fight this terrible dieses, I had this for thirteen years and its getting worse every day ,but I want to fight with you, to find a cure for this Dieses, that take way the dignity of so many strong folks. my God bless us all. Abu-baker
Welcome! So happy you found my blog and share the same positive spirit as you will find in all of my posts. You have a great attitude towards fighting PKD and wonderful that you are interested in getting more involved in the PKD community. There are chapters all over the U.S. The following link will help you find the chapter closest to where you live. http://pkdfoundation.staging.wpengine.com/connect/chapter-locations If you need any additional help connecting with your local chapter, please let me know. Wishing you all the best on your journey.
I would be interested in joining a group that Shear information and maybe help each other in some way. I live in South west Georgia/Tallahassee area.