Hope Square is a new online community started by the PKD Foundation:
Welcome to Hope Square – the only online neighborhood created especially for members of the PKD community. Whether you’re a patient, caregiver, family member or friend, you’re invited to share your interests, stories, lives and hopes.
It looks like it’s going to be a great place to meet with others who are coping with this disease, and a way to share what we all are going through. I’ve created a blog there that simply points to this blog. I hope we’ll be able to keep the conversations going.
If you’ve found your way here from Hope Square, please leave a comment and let me know! 
Entries (RSS)
I love the name of your blogging site! I think you’ve hit the nail on the head in our PKD world…and what a huge world it is! Frankly I’d rather use those lemons for a cool, icy, tropical drink filled with something alcoholic that isn’t all that good for us, but hey….for now we’ll just learn to make lemonade! I’m sure I’ll see you around Hope Square!
Hello. I came across your blog through your pointer on the Hope Square web site and enjoyed reading your story. As the husband of a PKDer myself, I can related to many of the feelings expressed. I maintain a list of PKD-related blogs on my own blog and plan on adding yours to my list.
Take care,
Bob
Hi! I also came across your blog through Hope Square. I am the wife and mom of PKDers who were both diagnosed in 2007….it was a really difficult year for me emotionally but I thank G-d that they are both doing well and that I am doing better too! Anyway, I just wanted to thank you for sharing your story!
Thank you Karyn, Bob and Marlene! It’s such a comfort to know that we are not alone in this crazy life of PKD.
I’m yet another person who found you through Hope Square! I was fascinated to read your blog because I’m at 18% kidney function and have been waitlisted for a kidney since April 2 this year. My wait time is expected to be a couple years, so it is possible that I’ll need dialysis before transplant (fingers are crossed it won’t be necessary). The info you shared about your fistula is helpful. I’ve read about them, but not from a person who is describing her firsthand experience. I’m one of those people that likes to know what it’s REALLY like. I was wondering at what point a fistula is recommended (i.e., percentage wise). So, for me to see you’re at 13% and you’ve just gotten your fistula is encouraging to me.
Thanks for sharing your story. I’ll be sure to check back in to see how things are going for you. Be well.