Katie's Journey With Rare Kidney Disease:

[@lauren_WI]

Great collaboration!! I’m literally at UWHospital and am now scheduled for several appointments for LPHS to receive an auto transplant. 🤗 🤗 to those whose experience a chronic condition and who pain. Not a lot of videos that have this information, so thank you so much! Bless 😊you for sharing your story, you are a WARRIOR 👏

[@diaryofakidneywarrior]

Thank you for your kind words ❤️

[@katienewell9605]

Thank you so so much for your kind words! Praying that your auto transplantation works wonders for you ❤

[@rasuk2117]

Great Podcast, learn more about kidney disease every day 😢🙏

[@diaryofakidneywarrior]

Thank you ☺️

[@kellymccomb8197]

It’s so great to see this topic covered! I’ve been recently diagnosed with LPHS and with it being so rare, it’s nice to know there are others out there who understand what we live through every day.

[@katienewell9605]

I am so sorry you have been diagnosed with awful condition, feel free to follow me and we can chat xx

[@michaelgray8841]

Ive had 10 months of persistent kidney Stone pain & blood in my urine. This is excruciating! My nephrologist has concluded LPHS just today! Mrs Gray

[@diaryofakidneywarrior]

Sorry you’re going through this. I hope that getting your diagnosis means that you can now get the right treatment to help your condition.

[@lauren_WI]

@michaelgray8841 I was diagnosed too! Are you considering ant medical interventions? I’m currently at UWMadison Hospital for a two day to meet the medical staff and get a procedure done. 🤗 to you, I know that pain you feel. We are in a rare group that nobody wants to be in!

[@michaelgray8841]

​@@lauren_WI I'm an NHS patient, so I'm still a long way off from even discussing treatment plans, I've been told so far there are no treatments for me, and I'm not sure my diagnosis has been finalized or just suggested. I've been prescribed butec patches, codine & medical cannabis to manage the pain. I haven't tried the patches yet, and only take the codine when I simply can't cope anymore. I'm very cautious of addiction, I'm determined this will go away, it's unreasonable to believe it wont. The pain sits at about 6 or 7 out of 10 24/7! With frequent spikes that reach 100000/10. It's been over a year of this constant pain now, so I think my pain threshold is increasing slightly. they've just discovered cysts on my liver last month, waiting for the appointment to talk about that. I hope your procedure works!! 🤞🙏 How is your mobility? I'm on crutches & can hardly leave the house. I'm now wondering if I need a wheelchair to go outside. I can't live hunched on a ball on the floor forever surely? Only going from the car to the Dr and back? How far in are you?

[@michaelgray8841]

​@@diaryofakidneywarriorThank you, it's literally living hell. I'd be happy to share my experiences with you too one day, theres so little out there about this condition. I've been keeping a detailed diary & been doing a lot of research. I've revaluated the proposed rarity of the condition too using AI, It's far far far lower than 0.012%👌