That's a tough decision!!! LOL!!! I think it was Skeptix, miss him, that posted about that. I tried it when my eGFR was 28 and it went to 29. I guess that was better than dropping to 9.
I'm having more blood in 2 weeks so I'll try it again and see.
I like yours. 85% kidney function sounds awesome that is so close to 100% you could reach out a long stick and touch it!!! LOL
YAY for you!!!! Great news, I hope that way takes over it sure sounds better.
Thanks! So, you think I can go with cystatin c based gfr?! 😅I'd really like that!
There are many gfr calculators!
I hate the 2009 version cause it says my gfr is 69! Hahaha
But the 2021 version says it's 74! (still a 7-point decrease, but anyway!)
And according to the 2012 cystatin c based gfr equation it's 85!
It's over my head, I think! What does it mean? My creatinine went up from 1.2 to 1.3 and my gfr is better now?!
I put numbers in the calculator to see what creatinine level equals gfr 85 for me and it's 1.14 (even lower than last year!) ! Does that mean there was a temporary 0.16 point increase due to a reason we don't know! What about the constant increase in creatinine level in 6 years?!
1.1 (2016)
1.17 (2019)
1.2 ( 2021 jan)
1.3 (2021 dec)
I'm really confused!
On the one hand, I'd like to think this cystatin c is much more accurate, and my GFR is 85, and on the other hand, I can't ignore the increase over the years!
My nephrologist isn't available now, so I'm going crazy!
I'm going to... But she's not available now. I was thinking about talking to an online nephrologist maybe! They usually answer my questions more patiently lol
Basically according to research if you had been testing lower with the creatinine test like below 60, and you tested higher with the C then your kidneys are running better than originally suspected. However, this doesn't mean they are ok, just better so continue to eat healthy and workout and keep your BP as low as possible..below 120/80. 110/70 would be ideal. The kidneys like really low BP. Anyway just don't let your guard down. Happy new year 🎉
Both my regular nephrologist and my transplant nephrologist say the Cysteine C test is more accurate. It’s my understanding that the field of renal care is shifting to Cysteine C testing.
Yes. Well, they're all normal. Seven clear ultrasound reports in 6 years. No proteinuria. Last years 24 hr sample showed 45 mg/24h (normal : lower than 150)Last weeks spot sample showed no albuminuria...
Doctors seem to wanna wait until I get to stage 3 to do something...
Maybe they're right. My nephrologist once said any drug we use at this stage can be counterproductive!
I'm not sure what medication she was taking about!
There are so many variables at play here. Look up some of my older posts about Cystatin C.I'll just say this; At THIS particular time, I think the most accurate formula takes both creatinine and cystatin C into account. The only agreement amongst the nephrologists is that Cystatin C is a good tool for the prognosis of ckd progression and heart disease. If your cystatin c egfr is lower than your creatinine egfr, that's not good. Older nephs don't trust cystatin C much. Newer nephs do. My creatinine eGFR is 49. My Cystatin C eGFR is 88. Which do you think I'D prefer? And lest not we forget that higher eGFR means less referrals and less business for nephrologists.
Thank you so much.I read your post on Cystatin C, and it was very informative.
What makes this a little more complicated for me is that 6 years ago when my creatinine was 1.2 mg/dl I worked out and I was more muscular. I lost 12 pounds since, and my creatinine has been going up... That's kind of worrisome for me. But yeah, I'll talk to a nephrologist about it...
You said higher gfr means fewer referrals and less business for nephrologists. You mean that's why they don't usually order cystatin c?!
It has been my experience that older nephrologists are more hesitant to embrace Cystatin-C as an adjunctive indicator, let alone preferring it as the primary indicator. Younger nephrologists tend to be a little bit more open to the latest research. Don't forget that BOTH creatinine and Cystatin-C have contraindications for usage as the primary indicator. That's why the combined formula is now considered by "most" nephs as the most accurate.
If you're young and it's 80, that's a head's up that you need to be aware of future ckd.Eat a healthy diet, take it easy on the protein, make sure you're always properly hydrated, and you'll be fine.
I'm 37. Last week I was actually thinking about whether I could turn 50 without dialysis, and then how many years I'd be able to continue on dialysis considering my other health problems (ITP)! And then if I'm lucky enough to get a transplant how long would I have it without rejection. How would I swallow so many anti-rejection pills (I hate to swallow pills and it's extremely hard for me)! 😅These are the kind of thoughts that come to my mind every day!
But yeah, I need to watch what I eat. I'd been doing it for 6 months, by going vegan! But it seems like something went wrong cause my creatinine kept going up.
It's time to turn back to a nephrologist. A new nephrologist actually!
Oh, I was reading the article happily and enthusiastically until I got to "The procedure will not be available to patients any time soon, as there are significant medical and regulatory hurdles to overcome."
It seems like the bio-artificial kidney will be available much sooner. Anyway, they're both American things, so it'll probably take a few more years for them to be available in my country! *Sighs*
This is all good news and it’s good to know that you may never need any intensive treatment in your lifetime if you continue good habits! I think the future is or promising in medical innovation but it’s better to avoid having to need any of that preferably. I’m getting a cystatin test next too. My gfr is around 80’s-90’s but I’m only 28 and my creatinine has been around 1.10-1.15 for years. Sadly the neon I got referred to said they can’t order a cystatin test and the coordinator said she never even heard of the cystatin test!!!
I'm pretty sure your cystatin c based gfr will be above 100! 1.1 isn't high for a body builder (well, doctors say so!) but yeah, get that Cystatin c test to make sureI found an old lab report of mine for when I was 26. I put the numbers in the gfr calculator, and it turned out my gfr was above 120 back then *sighs* lol
The doctor who did the surgery actually said they plan to test more on living (non vegetative state) humans in the next few years, I think clinical trials could last maybe a year or two if the results are promising. Remember, they ended the sglt2 studies early bc if such good results. I think by the time you would need any replacement therapy years maybe decades down the road, there will be new viable alternatives such as the bio artificial kidney or xenotransplantation. With crispr they modify the pigs genes to not secrete alpha gal that caused rejection. Who knows maybe they can use crispr or stem cells further to cut out rejection completely and remove the need for immunosuppressants. Also, there’s the freedom-1 trials right now thst have stem cells replacing immunosuppressants if I’m not mistaken
Oh, that's great news and gave me much more hope! Hahaha thanks! Yeah, for now all we can do is slow down the progression as long as we can and hope these future treatments will be available as soon as possible!
Exactly! The doct himself said a year or two but idk, we will see I guess. I think the global economy just cannot handle the cost of traditional dialysis anymore soci except better more efficient alternatives to arise relative soon. KidneyX just launched in 2017 I bekeive or somewhere around there. More work is being done in crispr and anti aging tech with some of the richest people in the world investing into those fields.
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