Sometimes what may seem like a simple gesture or action can prove to mean a whole lot to someone else. I had a ‘fall in love all over again moment’ with Noah last weekend. We attended a PKD support group meeting in Sacramento. I was standing with a few other people. We all had our names written on name tags. Noah approached our group and I immediately saw his name tag: “Noah Keefer, Wife w/ PKD/Transplant.” It warmed my heart to be visually reminded of his immense level of support of what I have endured and my desire to be actively involved in the PKD community and to help others. His name tag was letting everyone know his personal connection with the disease and his willingness to talk about it. Noah is an amazing advocate for the cause. Very knowledgeable of my health, enjoys helping to raise awareness and willing to talk to anyone about what I have gone through and what we endure as a couple. The other evening before we fell asleep, Noah said, “It is a privilege to take care of you.” I know I am the privileged one to have him by my side on this journey.
PKD is not an easy path to navigate, and I hope nobody is trying to do it all on their own. If someone does not have a support system within their family, there are so many of us in the community going through the same challenges you are who are willing to help. Last weekend was a reminder of this. Our Sacramento Chapter of the PKD Foundation has a new Chapter Coordinator, Julia Adams. Last weekend she hosted a meet and greet support group meeting in hopes to bring those interested in the community together to introduce ourselves and see what the interest of our local Chapter is. It was a great success and we are all looking forward to our next gathering.
There were 23 people in attendance. We spent most of the time mingling and sharing our stories and connections to PKD. Toward the end of the event, we joined our chairs together in a ‘circle of support’ formation. Julia expressed what inspired her to become the Chapter Coordinator. Julia’s daughter, Elizabeth, is a spontaneous mutation who went into kidney failure in her early 20s and received a kidney transplant from her father. Connecting with others going through the same struggles she was when Elizabeth received her kidney transplant was a huge help for Julia. She now wants to give support to others.
We then each shared our connection to PKD. There was a retired firefighter who is a spontaneous mutation and in stage 4 kidney failure. A woman who is also a spontaneous mutation, has 16% kidney function and is in the process of getting the appropriate tests completed to be placed on the transplant waiting list. A husband and wife with their two young boys, one of which has ADPKD. Two couples, and both wives have PKD. Our Walk Coordinator, Larianne, is the 5th generation in her family living with PKD. Also, a friend attended to provide loving support to her friend who is enduring PKD.
Nowadays we can research and learn a lot of information online, but we can’t obtain the same level of inspiration and support that is felt when speaking to others face-to-face. Everyone really enjoyed the meet and greet. One woman said that she did not think anyone else in the area had PKD and how appreciative she was for the event. The woman with 16% kidney function said that it was great to see Julia’s daughter, Elizabeth, and myself who are post kidney transplant. Sometimes seeing someone healthy after enduring what you will have to in the future can make a world of difference. It is that little extra hope that we yearn for and need. As Noah and I held hands while sitting in the Sacramento Chapter ‘circle of support,’ I was reminded of the importance and value for us to share our stories and connect with others. The simple gesture or action of sharing my voyage not only seems to help others, but also in turn helps me.
How does being involved in your local PKD chapter help you? Please share in the comments section below.
If you live in the Northern CA region and are interested in attending the next Sacramento Chapter event, please contact our Chapter Coordinator Julia Adams at sacramentochapter@pkdcure.org.
Our next big event is our Walk for PKD on Sept. 20 at the Sacramento State Capitol. For more information, please contact our Walk Coordinator Larianne Awbrey Austin at sacramentowalk@pkdcure.org.
We plan on having future support group gatherings and hopefully another fundraising event.
If you are interested in finding your local chapter, please visit pkdfoundation.staging.wpengine.com/chapters.
I love the End PKD bracelets!! Can someone please let me know where these were purchased?
I agree!!! I need those!!!
How do we purchase them and do the funds go to PKD??
Hi Emily & Rachel,
The bracelets were purchased from a friend, Karyn Waxman. All of the money goes to the PKD Foundation. Feel free to email Karyn at pkdmidsouth@yahoo.com if you would like to order one. Thanks for reading my blog!
Hi Valen
So well said. I could not agree with you more! When Michele was diagnosed 10 years ago the PKD foundation and walk were such an amazing source of info and support to us.
The convention in Chicago 6 years ago was so helpful and I never miss any of your PKD stories each week!
Thank you so much!
Hi Maureen,
I am glad that you were able to connect with this post and that the PKD Foundation and meeting others has helped you. Thank you for your continued support of my blog and my journey. Hugs!
Wonderful story! I too would like to know where I might be able to get that bracelet as well!! Can anyone tell us how??
Hi Karen,
I’m so glad that you enjoyed this post. You can purchase the bracelet by emailing Karyn Waxman at pkdmidsouth@yahoo.com
Thank you again for your thoughts! I too love the bracelets! Can’t wait to get one! Pls post how! Would love to go to the next PKD National Convention. I would be honored to meet you!
Love,
Liza
Hi Liza,
You can order a bracelet by emailing Karyn Waxman at pkdmidsouth@yahoo.com I hope to attend the next PKD Convention. It would be wonderful to meet you. Thank you for your support of my blog.
Hi, how can I get a PKD awareness bracket please
Hi Julie,
You can purchase the bracelet by emailing Karyn Waxman at pkdmidsouth@yahoo.com Take care.
Love the bracelets! Please tell where to order them!!!
Hi Betty,
You can order a bracelet by emailing Karyn Waxman at pkdmidsouth@yahoo.com Thanks!
I just found out about the Sacramento Chapter but was unable to attend the event. I hope I will be able to come to the next one. I was officially diagnosed with PKD almost 4 years ago. My mother has PKD and her father passed away from complications related to PKD when she was a teen. Thank you for writing about the meeting and sharing your journey with everyone. It does help to know that we are not alone and that we do not have to suffer disease without the help and support of others.
Hi Rose,
I am so happy to hear that you have learned of the Sacramento Chapter and are interested in coming to our next event. Thank you for your kind words. I look forward to meeting you soon. Hugs!
Support can make all the difference! Make the unbearable bearable. The PKD community is very fortunate to have The Foundation with a dedicated staff that we can turn to for information and connection with others in a similar situation. We are also most fortunate to have you, Valen blogging every week sharing your health challenges but always hope and inspiration! How lucky we are to have you and Noah as part of the Sacramento Chapter and thank you for helping to get the word out to others in our community who would like to benefit from face to face connection. I feel very blessed and grateful for our “Circle of Support”~ thank you for being an integral part! XO
You are so sweet Julia! I can’t thank you enough for your support and love. You are a gem! My life is richer with you a part of it. I am very excited that you are now the Sacramento Coordinator and others will have the joy of meeting you and having you help them through their PKD journey. You are perfect for this role. xoxo
Valen,
Another great blog! It blessed me and made my heart smile seeing Noah’s name tag. That’s the first thing I noticed, besides a fabulous picture of you two. It also gave me goosebumps to read his quote that’s it’s a priveledge to care for you- wow! I wish I could clone him or he had an older brother with his awesome personality!:)
Thanks for taking time to respond to each comment, too. I think that is pretty admirable of you to do that!
Hi Carmen!
Thank you for your continued support of my blog. I wish Noah could be cloned as well. He really is a gem. I am reminded on a daily basis of how special he is and my gratefulness for him and his love continues to grow. Noah has an older and younger brother, but they are both married. Again, wishing I could clone him for you. 🙂
I appreciate your kind words. The support from my readers means a lot and if someone takes the time to share their thoughts, I enjoy responding to their comments.
Hope you are doing well. Hugs!