Jullie Hoggan shares her path from PKD diagnosis to preemptive transplant, and how lived experience is reshaping support, navigation, and access for others
I really appreciated Jullie's roll-up-your-sleeves approach shared here. Patient Navigator and Kidney-Friend initiatives were an incredible takeaway and all the more meaningful with her perspective. I am discovering so much in terms of what's missing in kidney care today. It's refreshing to hear her optimism and solutions-focus. Thank you, both!
Thank you, Geeta! Yes, completely agree. Loved hearing how she came prepared with all the docs her team would need, and went to bat for herself to get things done on her timeline. It's amazing what an activated, engaged patient can do.
This is so timely for me. I’m an ADPKD patient at 27%. My nephrologist at a PKD Center for Excellence always says that we start the process at 20%. But I like the idea of getting my ducks in a row ahead of time so that I’m as ready as I can be when the time comes. I will be following all of the provided links to learn more. I’m so thankful for Julie’s willingness to use her experience to help build a better system for patients 🙏💕
J Vee, thank you for sharing. That is exactly why we do this, and Jullie is one of the best when it comes to paying it forward. I know she'll be so pleased to see this as well. Please do reach out and let us know if we can help you find more info or make new connections along the way.
![Signals From [Space]](https://substackcdn.com/image/fetch/$s_!IXc-!,w_80,h_80,c_fill,f_webp,q_auto:good,fl_progressive:steep,g_auto/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f7142a0-6602-495d-ab65-0e4c98cc67d4_450x450.png)
![Signals From [Space]](https://substackcdn.com/image/fetch/$s_!lBsj!,e_trim:10:white/e_trim:10:transparent/h_72,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F0e0f61bc-e3f5-4f03-9c6e-5ca5da1fa095_1848x352.png)
I really appreciated Jullie's roll-up-your-sleeves approach shared here. Patient Navigator and Kidney-Friend initiatives were an incredible takeaway and all the more meaningful with her perspective. I am discovering so much in terms of what's missing in kidney care today. It's refreshing to hear her optimism and solutions-focus. Thank you, both!
Thank you, Geeta! Yes, completely agree. Loved hearing how she came prepared with all the docs her team would need, and went to bat for herself to get things done on her timeline. It's amazing what an activated, engaged patient can do.
This is so timely for me. I’m an ADPKD patient at 27%. My nephrologist at a PKD Center for Excellence always says that we start the process at 20%. But I like the idea of getting my ducks in a row ahead of time so that I’m as ready as I can be when the time comes. I will be following all of the provided links to learn more. I’m so thankful for Julie’s willingness to use her experience to help build a better system for patients 🙏💕
Hi J Vee, I’m so happy this was helpful! If there is anything I can do to help please reach out.
Jullie
J Vee, thank you for sharing. That is exactly why we do this, and Jullie is one of the best when it comes to paying it forward. I know she'll be so pleased to see this as well. Please do reach out and let us know if we can help you find more info or make new connections along the way.