I have been stage 4 for four years. Gfr has dropped from 26 to 22 in four months.Bun is now 39. Creatinine now 2.6 Feeling very depressed. Considering to call it when I reach stage 5.
Stage 4 gfr dropping: I have been stage 4 for... - Kidney Disease
Stage 4 gfr dropping
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MICHAELON
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A little confused about who you will call at stage 5. Regardless this link should help.
niddk.nih.gov/-/media/Files...
Limitations on eGFR accuracy are on the bottom right side of page 6.
If you don’t have a doc who will address labs and either help you properly if they are concerned or ease your mind because, for example, eGFR is down due to any of a number of “normal” reasons, you need to get a new doc!
CKD is the most serious illness most of us will ever have. You need to take charge of your care and be your best advocate. That starts by firing your doc and getting a new one if they can’t meet your expectations of helping with your CKD…best of luck!
Love your advice, Blacknight! I am so angry about the shoddy medical treatments that I have experienced in my life! We DO at least have the right to fire these doctors and…..god bless….. find better ones!
There is no reason when in a position with a disease as serious as our CKD, to have any doctor who doesn’t meet our expectations. The doc leading your team whether it be a nephrologist or a GP should be the best doctor you have ever had. If not get another, our docs should take our illness as seriously as we do!
Hi, I hope you are doing better today. I get where this post comes from. It is ok to be there, just don't stay there. The mental part of this is just as important to attend to as the diet, eater excersize etc..Sending you the best. I'm just at the beginning of this, but my levels were suddenly horrible and I'm was reeling too. It touches ALL parts of life.
All the best
Thank you for your response. You made me feel better about the position I am in.
My brothers GFR had been 12 for over a year. He’s not perfect but still doing ok.
Try the SGLT 2 inhibitor. They have been shown to slow progression even at these low GFR numbers. It is all we have. Dapagliflozin. I just binged watched a bunch of video on it very promising!
I wasn't diagnosed till I was down to 17% and even then it was another 4 years before I needed dialysis. I actually think that if I had been given medication to slow down the progression I could have lasted a lot longer. My kidney failure was caused by an autoimmune condition. One thing I will add is that mentally I felt worse when I was at your stage than I do now on dialysis. So I completely understand what you are going through. It's horrible seeing your eGFR go down every time they do a blood test and living with kidney disease can feel very lonely. Just keep yourself as healthy as you can. Hopefully your numbers will stabilise. All the best
Hi there.
What activity have you and/or your doctor being taking to slow or halt the progression of your disease?
I ask because the sense of being helpless and doomed can't but drag you down. I've found, since starting a fight, that my mood has lifted and I'm far from depressed (myself: just slipped from eGFR 30 to 29 but bloods starting to improve significantly since going on a diet 3 months ago).
How old are you BTW?
I am in the same boat as you. What diet did you start?
Very low protein diet supplemented with a thing called keto acid analogue (pills). The supplement is basically protein without the waste element..
Given the level of dietary protein intake is so low, you have to go plant based. Even then you have to mind yourself as there's plenty of protein in plant based food too.
A chap called Lee Hull wrote a book on the subject (there's more to it than just low protein / plant, although they are key elements of it). Worth a read if your on the hunt for leaning.
The diet is pretty much latest recommendations by the NKF with the science showing it better than 'mere' low protein diets for implementation at early stages of the disease (3a onwards). That's ot to say there is one size fits all but there's merit in checking it out.
Own urea has dropped dramatically (13.5 to 6.4 (range is 2.5-7.8)) and cholesterol along with it in 3 months.
Thanks. I am trying to change doctors and hope that I can see a renal dietician. Only advice he gave me was to keep protein to less than 50g/day which I believe I do. I have egg/egg whites daily and meat portions 2-3 times a week. Cholesterol is 175. By Urea did you mean Uric acid. For me that is 5.3.but BUN is not =27 which outside the reference range.
That's the kind of lite-touch advice I got, but the current science is far more .. aggressive .. than that re:diet.
I'm on 30gr dietary protein a day (am trying to hit 25gr). And that's plant based (very occasional egg). I supplement with ketos to boost that 30gr give me the equivalent of 50gr protein day (which is the same as 8gr/kg body weight, my weighing 64kg)
BUN is a way to measure serum urea (we measure differently in Europe) and is directly related to protein intake. Animal or plant protein that is.
If your kidneys can't filter the amount of protein you're putting in fast enough, then BUN goes up out of spec. Urea is the waste product of protein metabolism.
Ergo, reduce protein intake and BUN will go down. But you need the amino acids in protein otherwise you'll become malnourished. Hence keto acid analogues: a form of amino acids that don't produce urea waste. They make up for the dietary protein reduction. You might call kaa's 'faux-protein'
There's much more to the diet rationale than just urea. The idea is to hit every kidney negative factor you can hit (e.g. urea elevated is kidney damaging so very low protein cuts out the urea factor) with the aim of slowing or halting the disease.
Indeed, many report eGFR uptick as they take the foot off the gas in terms of negatively loading their kidneys. Its not repair, rather: pressurised, if damaged kidneys working more efficiently when you work them optimally .. goes the thinking.
My going plant based also reduced cholesterol from 6.6 to 5.4 in a few months and I'll bet its gone down further since. Cholesterol had been sticky for me - always high but nobody, least of all me, paying attention to it. Once hitting 3b, my nephrologist prescribed statins- indeed I bought my first box. But held off taking them to see what diet would achieve.
And so, I've avoided a medication like statins! And pulled down a kidney morbidity factor (heart disease and CKD being intimate lovers). Just from halting eating dead flesh.
I'm actually pretty used to the plant route and am cooking tasty meals to fill the freezer. Yeah, a full Irish breakfast would be nice but heck...
Read Lee Hull using the 'Look Inside' feature on Amazon.com and you'll get the jist. Best move you could make, I reckon, to just read what he has to say.
I started to read his work. very compelling indeed.
Indeed it is .. like stepping right into the boxing ring. I think that's its main importance: Acting as a sort of boot camp to turn you from a snivelling CKD deliberating over the size of your red meat portion (a deck of playing card sized) civvies into a snarling marine.
It's a flawed book - overly long and requiring many re reads. It doesn't mention the role of hydration or gut much at all. But a great start
The part about the protein made sence to me. I'm too active for 30 grams. and high fiber.
Too active? Do you need protein for activity? I thought it was calories required (as in activity burns them)
Then again, I know feck all.
I was lifting before the the crash, so I could use some protein, but yes, carbs are nec too. The nutritionist got back to me regarding the supplement. She suggested same thing you did. Albutrix. I'll eat more tofu too since it is alkaline and drink more soy milk.
The Albutrix IS protein (in effect) so you can maintain a normal healthy protein intake (8gr/kg body weight). Its just that half of that intake is keto and the other half is dietary.
Dunno if that would be enough for lifting weights though.
If going the Albutrix route you'd have to manage your a limited (4gr /kg body weight) per day dietary protein intake. Soy is protein heavy so you can't go crazy on it - else you blow your dietary protein budget for the day but haven't taken enough nutrition/calories on board.
I'm there with you doing the GFR dance: two steps down, one up, etc. But, I began to realize that stress is a factor in the dance just like diet, hydration, exercise. And, it's so hard to pull yourself up when you get down because you think that theres no positives. But, for me there is. I'd prefer not to go on dialysis, but it's a life saver when you need it. Not many major diseases have that. So, I take comfort in knowing that. I wish the best for you and hope.you can feel a little better soon. Please keep us informed as there are a lot of us who care and are pulling for you.
BassetmommerNKF Ambassador
Ok, we all have been where you are at some point. Shake it off and time to figure out your next steps. My GFR did exactly the same thing. I went and saw a renal dietician and with diligence on my part slowed the decline down for 3 years. Then went plant based this past year and feel fabulous with a GFR of 15-13. Just started a GLP1 and my diabetes is already improved so hopefully so will my GFR (or least stay steady). There are things to do so get back into the fight. Don't feel guilty either about being scared and sad. It is part of the journey we all take. How you react is up to you. Best to you.
Problem is my wife died from covid in December.I have been under medical care for covid for 10 months.Add all f that to stage 4.The question of to be or not to be becomes a great e r ptoblem.
You’ve had a rough ride and a lot of us in this group will be able to relate to the feeling of helplessness when kidney numbers are dropping. But there’s things you can do to fight and life can get better and happiness can come back. Focussing on learning how to fight this disease and slow down the progression could help a lot
Michael hang in there. We have all been there. It’s time to take charge of your health with great vengeance. You are important and you need to fight. My GFR got to 4% and I kept fighting like hell. Many people need you In there lives. Stay positive and keep your head up. It gets better as long as you fight, do your research and take charge of your health. Wishing you the best of luck! Prayers for you 🙏🏼
Thank you to the many who responded to my situation. I have stage 4 with gfr at 22.I am now livingin a transitional living apt trying to recover for 10 months from covid.
My wife did not survive from covid.
All and all Loss of my wife, having covid and now stage 4 with a gfr
Of 22 and a bun of 39. Very depressing.
I don't know what your dr has been prescribing but I will take a chance and ask if he or she has suggested pentoxyfillene. If not you can research it yourself and consider whether it may be right for you. It is not a drug originally used for CKD but research has shown it slows its progress. Covid may bear responsibility for your labs going in the wrong direction.
Michael, please don't give up. I truly don't believe your deceased wife would want you to stop fighting. I know this is a time of tremendous sorrow in your life and to hear your test results only compounded those feelings. Give yourself time to morn and above all take care of yourself, see a dietician if you have not. If your doctor will not recommend one, do as suggested above, Fire the doctor. I have been through several cancers and I too am in stage 4 along with heart failure. Am I still fighting?? You can bet on it. We all have bad days, some worse than others, but we get out of bed and thank God we stand on our own 2 feet and walk. So hang in there and as you can well see, there's so many of us who do care. Keep us posted, I am awful about posting but I saw your post and felt I really needed to say something. I hope and pray all the notes have helped. My most sincere condolences on the loss of your wife to Covid.
Thanks again everyone. I will try to get through this.
This has been a tough road and you are doing amazingly well. Take one step at a time. Take comfort in action. The intentional diet, movement, learning can be really empowering. Get organized and ALWAYS reach out. So many have had your same feelings.
in reply to MICHAELON
Try gum Arabic ( sengal tree gum ) as a drink daily . We use that to stabilise gfr from dropping too much too soon . Patient is not fit for transplant or dialysis so we have no choice but to use this . So far we kept gfr at 12-13 over a year .
Skeptix in reply to
Had a quick look at this. It appears to have merit, although the mechanism of benefit is linked to CKD patients on low fibre diets. That is to say: because CKD-ers might well be vegetable limited (so as to reduce potassium intake), they become dietary fibre deficient. Arabic gum appears to be a way to get dietary fibre without the potassium.
And so, unless you're dietary fibre deficient , Arabic gum isn't going to benefit. It would appear.
That said: there is clear benefit of fibre (gum or veg). And so (yet) another pointer towards a plant based diet.
The below explains it and gives the hypothesis. Apparently there hasn't been much researching to it so perhaps there is more to Arabic gum than meets the eye?
I’ve just had results from blood tests last week and have seen a good improvement in many areas by following a Vegetarian / almost vegan diet. I am very surprised on how much things have improved and how much better I feel. It really does work and it’s not just manipulating the creatinine numbers by eating less animal protein. Have faith that things will get better and make it your mission to follow this up and improve things. My creatinine levels have reduced a lot in three months and this meant my egfr went up around 10 points. Protienurea has halfed and blood albumin which is considered an overall predictor of how the body is doing is just within range now. Cholesterol is also in the middle of normal. This is all with diet and I take an ARB. Don’t feel helpless here and give it 3 months with real focus on diet. Also, don’t give yourself a hard time if you have a few meals where you fall off the wagon. I did that and still seen big gains. All the best and I really hope you can also see these improvements
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