PLEASE SHARE HOW YOU FEEL WHEN EGFR DROPS >STAGE 4?

[MuddyGurl]

Hi newbie here. I have one kidney (lost one to cancer, am cancer free)
I am now teetering in Stage 4 with recent drop under 32 to 29 in Feb. then 26  JUST 30 days later.

I WAS feeling very fatigued, itchy, foot pain which seemed like symptoms of pre diabetes and/or kidney failing.

But I was also low on magnesium,  taking supplement, so itchiness is mostly gone, some toe tingling which could be anything I AM SUPOSEDLY NOT PRE-DIABETIC, BUT I THINK I AM BASED ON DR. BERNSTEINS BOOK.

My BG is considered normal, but I know being over 100  (103-130) all the time fasting or not is not good, HAiC  is 5.4…ideally Id be at 4.4 or so.

I am obese by charts, short, so losing weight has helped in many ways, but Neph has said no way food with alter my function.

OTHERS here have said it HAS helped to be on a veggie diet, lower protein etc.

I am TRYING to figure out WHAT failing function feels like to YOU. Will you share your thoughts and experiences please?

What did you notice entering Stage 4, at whatever number?

Did a diet change or meds change help? or raise eGFR at all?

While CKD is silent, I am fully aware how serious this is, and am not a passive patient justt waiting for bad news.

ANYTHING YOU CAN SHARE WILL BE APPRECIATED.
++++++++++++++++++++++

Currently  on a low protein LCHF diet plant based -lost 17 lbs over 90 days, and feel great in general….accepting fatigue is due to overworking my  sick kidney while overweight.  But dropping 3 points while ON a good weight loss diet is confusing.

[gotmoose]

When I was in stage 4 my main issues seemed to be fatique and fluid retention in both lower legs. Also waking every 2 hours during night to urinate.  Other then that I felt pretty good till I hit stage 5. Itching hasn't been to much of a issue least not yet. Far as food, I just tried to eat less protein and never use salt, also tried to avoid prepared foods. Doctor gave me Lasix for the fluid, but that didn't help much. Currently I'm stage 5 with a GFR of 14.

[Michael Murphy]

I put off dialysis for two years because I felt great.  I changed my eating habits and starting eating fresh food and avoided processed foods.  During this time I dropped 35 pounds.  I was in work one day began to get nauseous and ralphed in my recycle bin.  I took that as a sign to start dialysis.  I also know someone who has been teetering on the brink for about five years.  If you think you are going to do hemo dialysis have your fistula created asap.  It takes time to mature and is a lot better for you than a cath. That way if the time comes you are ready.

[kristina]

Hello MuddyGurl,
... to be quite honest, I have no idea, how many years I was in stage 4 because I was already expected to go on dialysis in Spring 1971
and was fortunate to keep off dialysis until December 2014... I must point out here that I have no idea (and doctors don't really know either)
whether my good luck was due to my strict vegetarian diet or something else or whether I was just very lucky ...
... But through all those years I have only eaten vegetarian home-cooked food since 1971 (no tins and no fast food...)
and I have always made sure to make an effort and keep myself as fit as possible ... The best option for me has always been to go for walks...
... I have also struggled with terrible exhaustion and fatique on a regular basis and was told by different medics that it could be connected
to "my" Systemic Lupus, MCTD and other chronic components etc. or "my" kidney disease which is Chronic Proliferative Glomerulonephritis...
... and because of those many different options it did not really matter what my regular bouts of fatique and exhaustion are due to
because there is no medical treatment for any of them anyway... The only thing I could do and have done for many years
is to always make a point and take a rest whenever the fatique comes over me...
Good luck and best wishes from Kristina.

[Sue]

I was first diagnosed with CKD in 2008, my kidney function had dropped to 11% by 2012 when I had fistula op, since then my function has fluctuated between 12-16% and is currently at 14%. The symptoms i have vary really, fatigue is the main one, morning nausea, some swelling of hands/ankles. I have had a couple of iron infusions, When I was first diagnosed my nephrologists told me that he thought that I would need dialysis within 6 months, but here I am 7 years later, still hanging on lol. I try to follow a healthy diet, I am still working. My doctor says he is surprised , but to keep on doing whatever it is that I'm doing haha.

[Athena]

Muddygurl, I wish we had the answers on how to beat this disease into submission with some certainty. One thing I can perhaps suggest is that sodium bicarbonate/baking soda supplementation - if approved by your Neph - has been found to have a preventative effect on some Stage 4 CKD patients in a pretty important study in the UK. This study has surprised quite a few Nephrologists. (You must however discuss this supplement with your Neph because it is contraindicated in some patients).

http://www.nhs.uk/news/2009/07July/Pages/Bakingsodaforkidneypatients.aspx

The link below discusses all the different factors in helping to slow progression of kidney disease:

https://www.aakp.org/education/resourcelibrary/ckd-resources/item/slowing.html

The only other I can offer is that sometimes eGFR can suddenly drop in response to adverse reactions to certain drugs or external toxins or infections. Did anything change in your routine or meds before you seemed to get worse? I became quite sick and fatigued after I was taking high oral doses of a hormone late last year. I am still in recovery from this and it has been very enlightening about how we can be affected adversely by different seemingly safe drugs!

Good luck in your quest for better health.

[SooMK]

I felt fairly well right up until I had my transplant. I had the getting up at night all the time and achey joints especially at night and less stamina than before. I had s little itching but never had any swelling. I was taken off BP meds and put on lasix in the months after my eGFR dropped below 20. I had been a vegetarian and was exercising and so on for years. I suspect that part of the answer whether CKD can be slowed is dependent on why you have CKD which many people don't even know. I have a genetic mutation and I think that there wasn't much that could be done. The bad guys in my kidneys were replicating and unable to be excreted so there you go. Perhaps I had already slowed it down. If I hadn't taken care of myself perhaps Stage 5 would have been there even sooner. I think only good comes from having a healthy diet, minimal processed foods, getting exercise, enough sleep and try to control stress (good luck with that, right?). Control what you can.

[MuddyGurl]

THANK YOU ALL!  I am firmly convinced "let food be your medicine".  yes it may be true there is NO going back up to a higher eGFR…but removing ALL strains and stresses off the body and the kidneys can't be anything BUT good, eh?

From what I read, and what some of you say fatigue comes with the territory,  CAN YOU HARM YOURSELF BY OVERDOING YARDWORK, for instance?
I tire out quickly if I try, and wonder if I am stressing the kidney?
 
I asked for the last 3 years why am I needing a NAP everyday, but the docs said it's nothing to do with losing a kidney in 2010…oh yeah? well why didnt they know that having a SICK kidney might be causing the fatigue?

I accept the nap..in fact I know how much better I feel, the 5 added hours of good energy AFTER a nap that it give me. I'll take it.

When I talk to the Neph on June 1 I am thinking of all the questions to ask…they will prolly say " we'll keep an eye on you" which means NOTHING to me, they will "watch me" all the way to ESRD if I did nothing for myself!

The urologist, right now, is pissed I put off a 3rd renal test, but I wanted a month to see if I COULD affect the eGFR  on my own, with diet, …will see, I go in tomorrow, and will know within the week what the current eGFR is.

[Simon Dog]

What did you notice entering Stage 4, at whatever number?

When PD failed for me, the symptom was vomiting.  I kept a bag in my desk at work, and would also take care of business by opening the door to my car at stop lights.   I also remember losing a breakfast (a big one from an all you can eat buffet) on the Las Vegas strip on the way to a trade show.    It got to the point where I could not keep anything down, and that reversed immediately after my first hemo treatment.

[Deanne]

I felt fine for the most part, right up to shortly before I started dialysis, and then it was fatigue that got to me. My ankles had been swollen for a long time, but I was usually able to ignore it. That last summer, I was less heat tolerant. I couldn't be out in the heat for very long before I felt like I would pass out. No vomiting though. I worked full-time up until dialysis, through dialysis and through transplant, only taking time off for necessary medical appointments and surgery recovery times. I continued to walk regularly, probably a couple miles after work most evenings, and four miles with friends every weekend.

When you said you dropped three points despite a healthier diet, maybe you'd have lost 6 points if you hadn't changed your diet.

Congratulations on your healthier lifestyle! Remember to celebrate your successes.

[MuddyGurl]

Deanne..you  know I had that idea too!  SInce I began 2015 without a recent renal panel and had a severe fatigue episode for a couple weeks  I wonder if I did drop even further, and between  the time of the Feb & April tests, that  I had recovered some.   If I had NOT insisted on the April rental test I'd still think I was 29, and they would tell me"they'd keep an eye on me"…right…all the way to dialysis in a big fat emergency! 

I APPRECIATE hearing the facts from all of you…vomiting may or may not happen, this is what I need to know. Fatigue seems universal. OK. Swelling..I dont have that yet.
So all the many aspects of failing function will be different for each of us..got it.

My 2012 Nov egfr was 37..dropped to 2014 June egfr of 32…so 5 points in 1.5 years. not good. but the VA did not initiate any Neph appt. Now i wonder why? fell thru the cracks..all they care about, honestly, is if I have cancer again.

So so eGFR 29 in Feb 2015…another 3 down may have happened over 8 months, or over 3 weeks in January, no way to know..

I had no CKD injury, no sickness, no reason for the failure externally from meds , etc. EXCEPT, the VA  had me on 325 Aspirin  after a stroke in 2013. ( it is NOW marked as NSAID on the box and never was before!)  for  2 years…when the studies show ONLY 75mg is BEST dose for it to prevent stroke..so Quadruple dose!! with one kidney,already Stage 3b???    p*ck.

The CASUAL not so benign neglect I get from them is infuriating.  I've complained here (Thank goodness I CAN) about many other small and not small cracks.

When you come away from surviving serious kidney  cancer and a complete Nephrectomy, you aren;t lookig for CKD too!  Especially when the doc & surgeon tell you you are FINE. 

SO After lots of research I  recently weaned OFF a depression med, and now am taaking ony a baby aspirin…still nervous on continuing it.   Stroke vs kidney failure..hummm, let me think.

I asked Dr. Jason Fung, Canadian Nephrologist, who treats very sick/obese diabetics, and gets them OFF insulin if I could help my kidney via diet. he says NO..hard to hear, but I am following a healthy diet and lifestyle and doing as much as I can..like all of you tried too. Dr. Fung's site:  www.intensivedietarymanagement.com

[Jean]

My kidneys were in stage 4, with a GFR of 29, found after a heart attack in 2007. Here now in 2014 the GFR went down to 16; "choke". Then it shot up early 2015 to 32!!!!! I was ecstatic, of course. Fatigue is the worst symptom all the way thru and it did not reverse itself with the 32. When it was at 16, I vomited every single day and that only lasted about a month. In a mere 2 weeks or so, I will be in seeing the PA and have the blood work done. We will see, won't we? This CKD absolutely sucks.

[PaulBC]

I'm curious after reading all this. How common is it to get a biopsy in these cases rather than just measuring kidney function? I realize that biopsy has some risks, so I'm not sure when it is indicated. It was one of the first things they did after my daughter was admitted, and the results were bad enough that I don't hold out much hope of her kidneys coming back.

[Mr. B 123]

MuddyGurl, I have been at Stage 4 for about 6 years, went to Stage 5 for about 6 months and ended up in the hospital for a week.  When I got to 4 I started having problems with Gout so the put me on medication and eGFR went down to 8.  Had the itch really bad and could not sleep and felt just poopy in general.  After I got out of the hospital and they changed my meds, I am still dealing with gout, but eGFR is about 23 and is holding there for about 2 years.  The biggest thing I have noticed is the fatigue, if I sit down for 5 minutes during the day I will fall asleep.  The gout when it does pay me a visit is the worst pain there is!  I have had it in my feet, knees and hands, not joints are showing damage and ache a lot.  I also limit my meat intake and that has helped I think.  Hang in there and take care.

[MuddyGurl]

HI Mr. B.. I am so glad you mentioned gout. I just figured out this is what is going on on my heel ..I have asked  my docs about heel pain over the years and get no reply  I even had X-rays of my feet..and didnt show much.

But early in AM  6-8am …I wake with the MOST incredible sharp pains only in my left heel.. go figure. If I get up and walk  HARD on the heel, or thump my heel against the wood floor it goes away immediately.

I looked up gout as a reddish swelling in the toes and skin but I dont have that.

And my protein is low so not sure why gout is attacking, I was not on a high meat diet before all this, RARELY ate red meat and now my diet is plant proteins only, but I do eat healthy fats..so i am wondering on the connection there..avacado, coconut oils ar supposed to NOT exacerbate gout.   I may keep taking 1/4 tsp of sodium bicarb at night and see hope I feel.

Do you know the connection to CKD? or it it known?    one more thing to worry over

thanks!!

[noahvale]

^

[MooseMom]

Muddygurl, I've had gout before, and I don't think it affects the heel as that is not a joint.

People with CKD, especially severe CKD, are prone to gout because the severely impaired kidneys do not clear uric acid efficiently.  It is high levels of uric acid that cause gout. 

Severe CKD can cause all sorts of things to go wrong.  Yes, it is definitely true that following a pre-renal diet can protect you from many of these consequences, but there are times when medications are the only answer.  For me personally, Stage 4 CKD meant that I HAD to take allopurinol for gout and statins for high blood lipids (as discussed in another thread); there were no other choices for me even while following the pre-renal diet for 8 years.

[MuddyGurl]

Thank you Noahvale-- I have had some "hook" looking  things on the bottom of my heel..and they said  it was not quite/maybe PF..but they only bother me seriously NOW that my  function dropped..

and MooseMom, yes I read up that gout can attack the heel and other parts of the feet and joints…'redness' may not show in the heel area.. but the pain is real as we know.  And it may be a combination of OVERWEIGHT crushing the heel, and uric acid lodging there, so not a joint, but the feet have HALF of our bones, so sounds reasonable gout will effect the whole foot.

I DO have high uric nitrogen of  37… when 10-24 is NORMAL..so I am guessing this is gout and  tied to the  failing kidney.

My cholesterol is well under, and I am good on LDL/HDL and Trig…so possibly I won't need statins.. I am so on the fence with taking them, which is why I am trying natural minerals, and diet as my first line of defense.

MM- you did exactly as much as you could to control health, and that's what I want to know for myself..that I didn't passively accept this.

There  was a wonderful lady researcher..she discovered  most drug trials  end just as bad effects might show up..so she spent her life researching to see if the body naturally defended and helped itself for as long as possible.., thus giving a false positive report,  so studies tend to stay at 6-8 weeks.

There is so much we dont know, isn't funded due to no profit for the people funding it,  so grants aren't given to study blueberries, for instance. despite the fact they are amazing for antioxidants.