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 ❤

[@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

[@rasuk2117]

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

[@diaryofakidneywarrior]

Thank you ☺️

[@yvonneferguson6073]

Thank you so much for covering this condition. I was diagnosed with LPHS 2 years ago after 11 years of pain and bleeding. Finding doctors who know about it and understand is so difficult although my gp has been amazing. Its comforting to know we are not alone and you talking about the same struggles resonated deeply with me. ❤

[@diaryofakidneywarrior]

Thank you so much for sharing your journey and for taking the time to leave such a heartfelt comment. I’m so sorry to hear about the challenges you’ve faced, but I’m glad to hear your GP has been so supportive. You’re absolutely right-finding doctors who truly understand can be such a struggle, and it’s one of the reasons why I started sharing these stories. Knowing that the podcast has resonated with you and provided some comfort means so much to me. You’re definitely not alone, and together we can continue raising awareness and supporting one another. Sending you strength and hope on your journey! 💚 #DiaryOfAKidneyWarriorPodcast

[@Abramelin93]

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!

[@Abramelin93]

​@@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?

[@Abramelin93]

​@@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%👌

[@SarahGray-LPHS-Scotland]

Hi Lauren, I got my own account. *Michael gray is my husband - I initially commented using his account. I'm still at the start of my journey, 14 months in! So I'm living on cocodamol with a heated belt & tens machine. They don't really help, but it makes me feel like im trying!

[@bebezita8178]

I too was diagnosed in 2024 with LPHS and no one understands how much pain I'm in or how fatigued I get. They thought I was making up the symptoms and magically causing myself to pee blood and treated me like I was just trying to get pain meds. Finally after decades of pain my now nephrologist diagnosed me with LPHS. Yet it's still near impossible to manage.

[@bebezita8178]

I was previously diagnosed with CKD stage 3a and bilateral medullary sponge kidney and bilateral thinning of my kidney cortex as well as getting multiple kidney stones a year that they contribute to the medullary sponge kidney. But many times I felt I was passing a stone a peeing blood and they can't find anything. Took going to the hospital every few days for 7 years for someone to finally diagnose me with LPHS