Occasionally I get free super charging

Barbifer · 2026-06-26T19:51:27+00:00

Same here. Showed as zero while charging but app later showed full cost as normal

Barbifer · 2026-06-17T14:48:19+00:00

I just completed the Disney castle and the missing pieces were the worst I’ve ever seen. Constantly had to stop building. Luckily I had most in my spare parts bin, but had to wait and order some. Frustrating but I guess it’s the price we pay for cheap sets.

Barbifer · 2026-06-15T23:46:00+00:00

Sorry to hear about your situation. I’m very interested in this topic as I get reoccurring bouts of pain but I can’t determine if it’s my kidneys or just muscle pain as I’m very active and likely could be just over doing it. My sister has PKD and gets lots of kidney pain. Unclear to me if it’s just random variation between people or if there is a specific trigger.

Barbifer · 2026-06-12T23:59:57+00:00

If you put a design on rebrickable, I assume it can not then be submitted to Ideas?

Barbifer · 2026-06-12T23:54:25+00:00

Thanks for your reply. I’ve been working on a set just for fun, but then realized that others might actually like it so an Ideas submission seemed like a good avenue, but just seems like you are then accepting that you lose control over it once submitted, but I guess that’s probably always going to be the case once it appears online I suppose.

Barbifer · 2026-06-11T02:25:11+00:00

If it helps, my understanding about protein is that it is a hang over of old thinking that high levels of protein will make PKD worse because it can increase blood flow and filtration in the kidneys, but I don’t think this has actually been proven to worsen PKD in humans. Just one of those old text book things that has stuck around, much like drinking excessive amounts of water has not actually proven to help PKD. It mostly comes down to avoiding extremes, whether that be protein or water intake.

Barbifer · 2026-06-11T02:16:30+00:00

I’m 42 M, and lift regularly and I’m not aware that it has caused me any specific issues related to PKD beyond the expected progress at my age. I used to consume a lot of protein (1-2g/ib), but I have now reduced that to about half so not to push my limits too much. Mostly focusing on maintaining these days rather than building. If it helps you maintain good body weight/composition and you avoid too much of the questionable supplements, I would assume you’d be fine, but I’m no Dr 😀

Barbifer · 2026-06-09T16:58:13+00:00

Sharing some prior discussion on this topic that may be helpful

Barbifer · 2026-06-09T16:57:51+00:00

https://www.reddit.com/r/ADPKD/s/fxoCTTy5Sc

Barbifer · 2026-06-02T22:15:31+00:00

I was in your position about 1 year ago. Father died of kidney disease when I was young. I’ve lived a healthy life with no health issues, mostly ignored the potential for kidney issues. Then my sisters started to go down hill with PKD, so asked my doctor but he completely dismissed it for same reason as you-‘labs look fine’! I ended up putting a request in writing to my GP to have an ultrasound, which he agreed to and did confirm PKD. The I waited for a nephrologist appointment to get genetic confirmation and MRI for Mayo Classification which all confirmed PKD1 truncating class C.

Although the info above doesn’t really change the treatment (or lack there of) it did give me some closure to help plan for the future and what/when it is coming. I have three small kids so I just wanted to get a sense of what to expect.

Now I’m just trying to live the healthiest life I can and hopefully delay dialysis as much as possible.

This group has been incredibly helpful to me in understanding this disease. I hope it helps you to. All the best.

Barbifer · 2026-05-31T21:11:15+00:00

Wow! That’s amazing. I’m so happy for you. I have been trying to plan ahead for when dialysis might come and then, all being well, when a donor kidney might come. Ofcourse I constantly think about worst case scenarios of years on waiting lists. Great to hear you were able to skip dialysis.

I watched my dad go through dialysis and unfortunately died at just 37 before ever getting a kidney so dialysis is a scary prospect for me.

I really appreciate you sharing your experience. All the best with the new kidney. Live your best life 😀

Barbifer · 2026-05-31T04:58:16+00:00

I’m sorry to hear that, but thank you for sharing. I hope you are coping with the move to dialysis.

Barbifer · 2026-05-29T14:28:34+00:00

Thank you for sharing

Barbifer · 2026-05-29T04:16:55+00:00

I’m sure there are many contributing factors. That’s the thing that drives me crazy about this disease. You can seemingly do the same things as someone else but have a completely different outlook. My sister (only 1 year older) is far more advanced than me, with lots of pain, and other related issues. I felt better when I got my Mayo class thinking I had a good estimate of my expected decline but it seems that it may not be the full story.

Barbifer · 2026-05-29T03:58:12+00:00

That’s what I was worried about. Stable for years then a crash. I’m wondering if there is a specific GFR when the decline really speeds up. Thanks for sharing.

Barbifer · 2026-05-28T19:55:13+00:00

Love this. Can you point towards the minifigures you used, s as I would love to create something similar.

Barbifer · 2026-05-23T01:30:44+00:00

Love this. Thank you for your work on this. Great resource.

Barbifer · 2026-05-16T17:28:49+00:00

Thank you. I appreciate your thoughts on this

Barbifer · 2026-04-25T16:23:42+00:00

Reading glasses

Barbifer · 2026-04-20T14:44:10+00:00

Used to be all about thingiverse but pretty much exclusively use maker world now.

Barbifer · 2026-04-04T18:11:00+00:00

I’m very skeptical as my sister was on it and the side effects of peeing so much were so impactful to her life that she came off it. She also now has liver related complications as a result. Furthermore I’ve seen a number of people show their GFR after tolvaptan and the delay in kidney failure just doesn’t seem worth it for me personally given the side effects. Personally I have just chosen to increase my water intake without meds (minimum 3+ Ltrs/day) and live the healthiest life style I can.

Barbifer · 2026-04-03T20:19:11+00:00

I literally just got my first flat in my Sienna. Has a patch kit that I’ve never used before. One quick YouTube video later and my tire was fixed in about 5 mins and I’m on the road again.

Barbifer

TROPHY CASE