Follow-up and info I've learned about CKD - may help other newbies

[manort]

A couple of weeks ago, I wrote this post about a high creatinine result;

healthunlocked.com/nkf-ckd/...

This morning, I got the results back from the tests my doctor ordered. This time my creatinine level was 1.09 and though high my doctor said I am not in any current danger. He still wants me to eat a better diet, of course, and I will be doing that. This has been a scary week.

It seems my high results may have been from things like dehydration (test in the hot summer and I walked to the testing site), occasional creatine use, etc. He thinks that I have some injury to my kidneys, but he says based on the pattern of results, the injury is old and not progressing currently - perhaps from early birth or liberal use of Advil when I was in my 20s and used it as a hangover cure.

Things I learned from this experience that might help others:

* I had 3 yearly tests that had high-creatinine levels. The first one a GP told me not to worry because I was a big foreigner. That level, 1.23, might not have been sky high, but it was high enough to have been taken seriously at the time. If a doctor blows off high levels like this, insist on having tests done. If my creatinine level came back high this time, I would have been pissed that I had the chance to deal with this 2 and a half years ago but the doc didn't act.

* Bubbly urine: I still have bubbly urine which sometimes meets the definition of 'foamy' according to what I found on the internet. There are a lot of reasons for this, and protein in the urine only seems to be a reason about 1/3 of the time. Do get it checked and monitor over time, but do not panic about it.

* Be careful of the GFR calc sites. They are often designed for different purposes, often doctors, and you can get WILDLY different results. I feel that ones that take your actual body surface area instead of the 'standard' measure are your best best. Of course, getting a doc to conduct the tests that will give you a more accurate number are better, is better, but using the ones that include body measurements like height and weight may ease your mind considerably.

Finally, to the people who answered my previous post and to all the folks on here offering each other support... What a fantastic community for people dealing with this. Keep it up. I'll answer questions posted here from anyone who feels they can benefit from my experience, slight as it is.

[orangecity41 NKF Ambassador]

It is good your Doctor prescibes you keep on your Kidney diet. Thanks for the good comments on this forum. We support one another in this CKD journey. Keep us updated.

[debsgm]

Thanks for the details.👏👆👏

In terms of basic kidney self care, a consultant NHS nephrologist told his underlings in a ward round,

“Always look out for FROTHY urine. If it’s frothy, there’s protein leakage which shouldn’t happen with healthy kidneys”.

I’ve never forgotten this. I have lupus nephritis.

But of course it’s a question of degree of frothiness? which can only be measured in a lab. Of course traces of blood in urine are microscopic and invisible.😥

Urine colour is also highly important.

Regards

[JEanes55]

I’ve been having a high Creatinine too! Six weeks ago it was 1.9 and now it’s 2.4. My doctor says my kidney function is stable. I am worried. I don’t know why! I do know I’m very dehydrated and try to drink more water. I just don’t know what to do??

[Tuolumne]

I'm glad that things are looking better for you and glad that your doctor urged that you stick to a better diet!

I've wondered about those GFR calculation sites. I noticed that when I do one with body surface calculated in, my GFR is normal (or at least, Stage 2 and not a concern). That does make me feel a lot better. But like you, I'm sticking to my improved diet. It could be that my diet improvements (i.e. not eating like crap anymore) have "pampered" my kidneys to give me a Stage 2 GFR and if I were to revert to old habits, it would get worse. I'm not taking that chance! It *is* scary, to be sure!

[manort]

Yup. Depending on what I used, before my new readings I was ranging between 42 and 75 GFR. It strikes me that those sites are a bit irresponsible because though 75 is bad, it's in the 'I can handle this with changes' range while 42 is 'I need to make plans for what will happen if those goes south' range. That's a bit too big. Good job stablizing your situation and good luck. First step for me is to lose 20 pounds.