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 firstname.lastname@example.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 email@example.com.
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.