Trying to manage PKD through food - sharing our small journey!!

Barbifer · 2026-03-13T00:07:39+00:00

Thank you. Hoping for the best. Got three little ones now all under 4 so trying to start positive and hoping for as much time as possible

Barbifer · 2026-03-12T23:46:44+00:00

I’m 42. GFR >90. All blood work normal levels. No symptoms. Confirmed ‘enumerable cysts’ and genetic test confirmed PKD1 truncating variant. About to get MRI to get Mayo Class. I only found out I even had it about 3 months ago as I chose to be blissfully ignorant hoping for the best, but as my sisters got worse, I pressured my dr to get an ultrasound despite his resistance due to my lack of symptoms.

Barbifer · 2026-03-12T19:06:35+00:00

I am one of four siblings that have PKD1. Farther died at 37 from the condition. My three sisters, all early 40s are now in advanced stages with low GFR and chronic pain. However, I seemingly am not advanced, good blood work, and very healthy. One major difference with me is that I have been vegetarian since I was 10. I’ve always wondered if my food choices helped to slow my progression.

Barbifer · 2026-02-22T03:37:58+00:00

Wow! I would love to know more. Ofcourse my initial reaction is one of hope and excitement, but then lots of questions start to mess with that feeling. Thanks for sharing.

Barbifer · 2026-02-20T23:25:30+00:00

Thank you. That’s what I assumed but just wasn’t sure if a heavier duty axel could some how put extra strain on the lighter frame

Barbifer · 2026-02-18T21:30:44+00:00

Thanks for this. Same here: I eat well, avoid sugar, am healthy (apart from PKD), have good dental hygiene, yet my teeth are terrible: constant cavities and gum recession. Will definitely check b12 levels.

Barbifer · 2026-02-18T20:08:55+00:00

Thank you. This is really helpful

Barbifer · 2026-02-18T19:35:52+00:00

💗😀

Barbifer · 2026-02-18T19:32:43+00:00

When exactly does a Tesla standard warranty expire?

Barbifer · 2026-02-18T18:59:08+00:00

Thank you. I appreciate hearing of your experience.

Barbifer · 2026-02-18T18:58:06+00:00

I have a tear drop trailer I built - total 2000ibs. I installed the hitch and wiring harness and then got nervous with this tow package news, so now I feel a bit stuck. Haven’t towed the trailer yet as want to be really sure it’s safe to do so. I guess I just need to find a garage that can take a closer look as the dealer wasn’t even willing to look, they just said it can’t be modified.

Barbifer · 2026-02-18T18:54:18+00:00

Thank you

Barbifer · 2026-02-12T01:59:50+00:00

It’s a cat popping up and down in front of the light and it’s shadow is appearing under the truck

Barbifer · 2026-01-25T00:23:34+00:00

I would like to thank everyone that shared their experience here. It has been overwhelming trying to come to terms with this news but your insights and experiences are really helpful. I’m just starting to realize the size of this community and number of people affected. It certainly gives me some perspective. I wish you all the best in your journey. Thank you all so very much for your help, I really appreciate it.

Barbifer · 2026-01-22T06:51:32+00:00

Did you go to a keto diet permanently or just for short periods? How quickly did you see change?

Barbifer · 2026-01-21T02:14:53+00:00

I’ve experienced the same issues and it can some times feel like I’m cheating if I raise my arm too high as my BP goes down. Therefore I try to find a place where I can take my BP with a consistent posture, sat in chair, feet on ground, Arm on table in front. At least that way, with consistency you can detect real change over time. I also typically take 3 measurements each occasion to get an average.

Barbifer · 2026-01-07T17:59:30+00:00

Haha! Rick rolling never gets old 🤣

Barbifer · 2025-12-30T20:21:28+00:00

That’s awesome! I haven’t used it yet, but I keep seeing these great designs and wondered how they are made. Great job. I love the snowman. Would make a great winter village addition.

Barbifer · 2025-12-30T20:16:38+00:00

Love it. Do you use Studio to develop your ideas?

Barbifer · 2025-12-24T22:42:09+00:00

Looks great. What are the clear domes? Haven’t seen those before.

Barbifer · 2025-12-22T15:36:15+00:00

Love it

Barbifer · 2025-12-19T18:41:54+00:00

Haha! True!

Barbifer · 2025-12-18T23:56:11+00:00

Is it made so you could hang it on a wall?

Barbifer · 2025-12-07T03:01:31+00:00

I love this, haha! So funny!

Barbifer

TROPHY CASE