How do we assemble our cumulative CKD knowledge so that it's a) digestible and b) easily accessible to all?

[Skeptix]

An impossible task (especially with the HealthUnlocked format) but it seems there's great knowledge out here amongst us .. but no way to assemble it in an easily accessible place.

We seem doomed to repeating ourselves and having useful information 'slip down the page' and out of view.

How on earth could this be rectified. Like even KDOQI and KDIGO don't tally (the latter 2021 update doesn't appear to include much on diet at all, whereas the former are advocating very low protein diet at early stage

It just seems like such a waste to me.

[RoxanneKidney]

I think that too. But I think mostly the people who find this page are newly diagnosis and just need the reassurance, so it is good that you stick around. I suggest that you create your posts on another document...like for food suggestions and the basics, then just copy and paste when someone gets on and is freaking out. I get it. I freaked out too and wanted to know when I was going to die. Then after I started working and living my life again, I forgot about dying and focused on living well. If I felt worse that would be MUCH HARDER to do, so I gain a lot of strengh by being here and reading the posts of those who are experiencing greater difficulty and hope and pray that I will have the fortitude and bravery that they have as well. So maybe it is not the knowledge afterall; maybe it is the therapy. 🙂

[lowraind in reply to RoxanneKidney]

After I was first diagnosed, I did what you suggested, "I suggest that you create your posts on another document...like for food suggestions and the basics, then just copy and paste when someone gets on and is freaking out." , and found it very helpful. Four years later, I still sometimes refer back to those notes. However, I must say, I miss Mr. Kidney much for his wisdom and knowledge.

[purejoynow in reply to lowraind]

he's got a youtube channel now, MrKidney

[lowraind in reply to purejoynow]

I very much doubt he is the Mr. Kidney to whom I am referring.

[purejoynow in reply to lowraind]

he is. He mentioned it in one of his shows.

[Sophiebun11]

I've used the "search" feature to look up things before I posted. I don't know how you'd accomplish what you are suggesting without someone taking on the task of cataloging everything the way Google does. BTW, that wasn't me volunteering : )

[Darlenia in reply to Sophiebun11]

Hear, hear! The "Search" feature is marvelous. Highly recommend.

[Blackknight1989]

In one big long huge Gianto Thread. I. I’m with you…why I have been less active lately. Posting and reposting the same links and info over and over grows tedious, I did get involved this last weekend some and intended to be involved more as I had hella links for NilsB and in answer to you in his Gout thread and the same in answer to Sophie and OrangeCity in another thread. However, asI was back and forth between pages on my iPad in both casesI had finished with one of my “books” (I am well aware I am a tad long winded but just a smidge at times…lol) and I hit the back button on the thread instead of switching to the page I was going to copy the last link from…and I lost both of MY posts. I was so dadgum mad I just quit! Anyway. Maybe we could post a pinned thread with subjects like eGFR, diet and nutrition, dialysis and others where we could all contribute both our experience and thoughts on CKD and the specific subjects as well as links. It could be a living document with additional adds as things continue to development in treatments options etc. How ver, that post would have to be well moderated as there is still a lot of misconceptions and as a result misleading information still from those folks who believe and all fruit and only fruit diet will raise eGFR from 20 to 150 in only a month! Just joshing but y’all know whatI mean. Doing that would make our replies to new posters much more supportive and less scientific for lack of a better word.

I for one would like to see that if only for links and the disclaimer that if you were just initially diagnosed in stage 3b or worse, hell any stage not stage 1 and you haven’t been referred to a specialist because your GP or worse nephrologist told you not to worry that you still got a long way to go before dialysis I will recheck labs in 2.5 years… have a nice day…that behavior from your medical professional that is really malpractice is WAY too common. With the stories most who have posted before me have related, well, those still blow my mind. With the huge push by ASN, NKF and NIH/NIDDK for early diagnosis and the real avalanche of advancements in CKD options lately (as opposed to dialysis that is a 50 year old technology still used as the front line treatment and expected to sustain us when we are at the sickest and most venerable) that should be the exception of the rule. But, I guess doctors are just people too.

Good idea and I have seen it done in so many other forum settings no reason with the right commitments it couldn’t be done here.

[WildIris]

I also used the search function a lot. I skimmed a bunch of cheap books and found the Lee Hull book which I took the most seriously because of all the research and references and the way he seemed to be trying so hard to be thorough and honest. Like Blackknight1989 says, it would be helpful to tell the newly diagnosed who want to be proactive that diet matters a lot in CKD (and other diseases) no matter how reassuring your doctor is, and the sooner you improve diet the better, but CKD is usually slow (which my sister told me). There are specific attitudes and practices and events that slow it down or speed it up. I agree that a pinned introduction to CKD disease by fellow kidney patients could be really helpful, but HealthUnlocked is developing a forum app for a lot of different health conditions and I don't know how open and flexible they are, or if you can lock a thread? Maybe the moderators know more? I know you can form a sub-group, eg diabetic kidney disease, how about a a subgroup "Suggestions for the newly diagnosed" where we could comment on each other's posts and maybe lock it after a few weeks? I love reading about the experiences of people in other countries.

[Hidden]

I just received yesterday the results of the blood test that I did following your advice: no exercising 2 days before the test and drinking a lot of water.I'm so happy to write that my creatinine went back to normal and my GRF went up too.

Thank you so much.

[RobertSterbal in reply to Hidden]

Would you cut your dog walk short (or similar activities) as well or do you think it won't make a difference?

[UniqueCKD]

seems like a great idea for an app for CKD.

[RobertSterbal]

I like wikis for this type of problem