Left hanging...severe anxiety...please help!
Posted , 16 users are following.
I am on the verge of losing everhthing: family and mental health. I am scared beynd belief, my life is spiraling out of control and I feel I have nothing solid to hold onto.
I can't seem to get enough information from my nephrologist that would give me some complete peace of mind.
If you could help with any encouraging view, God bless you! I have been living in fear and doubt for almost a year now and my family is about to give up on me.
Briefly, I first became alert to the kidney issue when I noticed a drop in egFR from 98 to 77 in my annual labs. This was right a few months after I got sick with pneumonia (with infection in the left lung) from which I recovered.
I asked my pcp about the drop - and she said it's still normal kidney functiion and that it can drop with age, could be some dehydration too, etc. Next year I insisted on referral to Nephrology because I felt something was not right with an e-GFR in the 70's at the age of 42-43.
I am now 44 and since then I have had GFR-s in the 70's and 80's. It never went back into the 90's where I was before pneumonia.
Nephrology found some very low-grade proteinuria right around 200 mg/24h (barely outside of normal). Everything else normal, including ultrasound. No HBP or diabetes, grerat cholesterol.
A recent test when I ate less protein and lyed down during the day quite a lot came back at < 110 mg/24 h (normal); so I am suspecting some postural/orthostatic protein drop too out of those 200 mg I seem to normally have.
These are eGFR numbers since 2014:
July 2014: 98
July 2015: 77
Nov 2015: 86
Aug 2016: 75
Septeber 2016: 82
October 2016 (repeat): 84
April 2017: 72 (lowest yet)
My nephrologist's conclusion was that "even though my collection is consistent with some CKd stage 2, he does not think that clinically, I have CKD at this point".
He told me that the little proteinuria I have is clinically insignificant, that there can be many benign reasons for a little proteinuria and that my kidneys, while not perfect, will last me "another 90 years".
I had a 6 months follow-up recently, and despite about the same level of protein and a drop from 84 to 72, he says it's just normal variation, nothibg eslle to talk about. He tried to reassure me seeral times that I don't hace CKD.
My fears come from reading all the info online. Technically speaking, I do qualify. And if right now I don't' have a diagnosis, I am terrified that soon I wll - inevitably.
Please tell me:
1) Is it possible my dr. is right and I don't have it?
2) Is it possible this is just variation and it won't progress?
3) If it does...how long do people stage in earlier stages 2 and 3?
4) Is there any chance I could see an impprvement in serum creatinine and implicitly e-GFR with serious lifestyle changes? I spoke with a naturopath and she presscribes some lifestyle changes and some anti-inflammaroy supplements.
Please help with some reassurance as I am hanging between only a faint hope of returning to the world and irreverisible break down.
0 likes, 36 replies
Linda_Mac syracusa
Posted
Syracusa - your response to my previous is not visible yet, but you may want to think about what damage your chronic anxiety levels are doing to your kidneys and body. Unchecked stress hormones can wreak havoc on many systems of the body including the kidney. Have you googled effect of stress on kidneys? And what about your quality of life right now? You may need an anti-anxiety drug to reduce your anxiety to a level where you can start to practice and learn non-drug methods in effectively managing your anxiety. If they work, you can try going off of the medication under the supervision of your physician to see if your anxiety is manageable using the other tools. You may never trust that Zoloft is completely safe for your kidneys, but you also have the choice of whether or not to take it. If I wasn't taking Asacol and Canasa (both admitted by the drug company to be damaging to kidney function) for managing colitis, I would never know if I was going to have a flare-up and these are very difficult to manage once they happen. I would suffer from pain, not be able to eat normally, be too sick to work and just feel awful for a long period of time even after going back on the meds. I choose to have a good quality of life by taking the medication that effectively manages that disease but probably harms my kidneys. You can have hope that you can eventually manage anxiety without medication and avoid any potential harm to your kidneys.
syracusa Linda_Mac
Posted
Linda,
I did not mean to ignore your reply - it is SO much appreciated!
Each and every answer that offered some reassurance helped a lot.
I am so sorry to read you also have the colitis problem.
I remain confused when I see that so many people are able to handle uncertainty over health much better than I do.
I am not denying my anxiety is very high and that I need to address it somehow. I will start seeing a counselor on Monday.
I am just scared that my mind won't want to work with the classic "counseling" methods of "mind/attitude changing" given present hard facts.
My mind keeps wanting to change the facts (as in remission, some reversal of kidney function, or halting). In other words, doing something to address the reality, not the mind only.
I have an extremely analytical mind (also trained in statistics and the scientific method) and all my mind can do is cling to numbers, odds ratios, life exepctancy averages, studies and medical reports, etc.
I tried to make myself accept that even with an eGFR in the 70's (and hopefully still 80's) at the age of 44, it would mean:
80's - in 40's
70's - in 50's
60's - in 60's
50's - in 70's
40's - in 80's
30's - in 90's.
Or if it's more like 70's now (which it appears to be), I would have 20's in 90's.
So maybe OK - but that's assuming it will drop at the normal rate of 10 points per decade, not faster.
But then I read so many reports where they say that the problem with CKD for most patients is not that they run out of kidney function like you run out of gas (as in ESRD) but that they die earlier of some heart problem.
And then I panick.
Not sure to what extent this applies to most and not sure whether there are CKD people who live to a very old age.
Before this came up, I always thought my heart was one of my strongest health assets; with cholesterol my dr. gushes over, normal BP and pretty decent cardio endurance.
But now, my sense of safety regarding heart was turned upside down.
I know it sounds perhaps "rather entitled" to assume I should even be here at all in my 90's; but until recently, I have lived on this weird family-based reassurance that this is quite possible as all of my grandparents lived anywehere between 90-100. Parents still alive at 72 although both have Type 2 diabetes. Grandparents had none of the chronic diseases that seem to ravage our modern world.
All literally died of old age, for the most part. No cancers, no diabetes, no kidney issues, nothing. When my amazing grandfather left us at the age of almost 100, we did not even know clearly what he had, if anything. Just old - and missing my grandmother terribly. His sister is still alive (with 1 kidney) at the age of 96.
And then this kidney thing hit with information that almost predicts with certainty that my life expecancy won't be nearly as brilliant as my family's.
My nephrologist said "kidneys will last you another 90 years"; and I said you mean "into my 90's?" to which he said "no, 90 more years!" - clearly trying to use a hyperbole for reassurance;
but to my mind, this had the effect of not being able to take him all that seriously.
LynQ and Pepasan,
As mental health professionals, I wonder whehter you have any knowledge about the possibility of gaining back some kidney function with improvement of anxiety.
If I have any hope whatsoever in terms of seeing some natural recovery, it is with switching to a largely plant-based diet and changing sleep patterns.
I havev tried the PB diet (vegan) for a few days but it is excurciating as it is very hard for me to get enough protein eating this way and i literaly waste away.
Naturopath says "balanced diet" because vegan is not sustainable long-term - though some people clearly do it.
I also did not know that going to bed very late and often getting less than 7-8 hours of sleep can actually affect organs. I vaguely knew it was not "ideal" but did not know it can actually be that harmful.
So I am hoping that by regularly going to bed early (with Spartan schedule), sleeping more and better (with melatonin), might lead to some organ regeneration/repair and some recovery of kidney function over the long term - if at all possible.
I read about some recent study that has revealed kidneys are not as "non-regenerating" as scientists belived until recently.
Thank you all so much again.
LynQ syracusa
Posted
Compare Productive and Unproductive WorryBy Allen Elkin from Stress Management For Dummies, 2nd EditionWorries can be productive, helping you manage your life and reduce your stress. On the other hand, worrying can result in unnecessary fear, anxiety, and upset. Understanding the differences between these two forms of worrying — productive and unproductive — is an important step on your path to managing and ultimately minimizing your worrying. Here are some criteria to help you figure out which category your worrying falls into.
Unproductive worry
Unproductive worry displays the following characteristics:
It imagines all sorts of unlikely outcomes.
It assumes that one bad outcome will cascade into a series of even worse outcomes.
It worries about events far into the future that don’t need a solution right now.
It assumes that your worrisome thinking is valid and reflects the realistic truth.
It assumes that your negative feelings are accurate measures of the importance of the worry.
It rehashes negative experiences in the past.
It demands that you have control over just about everything in your life.
It refuses to accept that negative experiences are part of life.
It makes the approval of others an overly important need.
It accepts only perfect, or near perfect, solutions to problems.
Productive worry
Here’s what makes this kind of worrying adaptive and functional:
It helps you solve a problem or resolve a situation.
It doesn’t demand certainty.
It’s not overwhelmed by emotion.
It turns a worry into a problem to be solved.
It explores appropriate ways of finding a solution to a problem.
It doesn’t get stuck in evaluating unrealistic outcomes.
It defers those worries that can’t be solved until a future point in time.
It’s not long lasting and can be ended in a relatively short period of time.
It accepts that loss and tragedy are a natural and expected part of life.Add a Comment
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syracusa LynQ
Posted
syracusa
Posted
I saw my PCP and she said "not worried about your kidneys, worried about your anxiety". She also said something about "you're nowhere close to dyalisis" which made it worse for me, as I'm supposed to believe everything is normal and I don't have CKD.
It seems to me that Drs. do not worry about drops in kidney function to levels they themselves categorize/label as "abnormal/pathological". Which is weird.
As as my nephrologist says I do not have CKD at this point, I wonder whether it is possible to improve creatinine levels with diet and lifestyle changes.
I read some some reports that this is possible, yet most of the Net suggests you can't improve kidney function.
If I now have an egfr in the 70's, how long until it drops to under 60's and then I will qualify for CKD regardless of proetinuria.
Is it really possible to halt this decline?
Drs. Want me to calm down my anxiety with reassurances of "you're fine now" - but ignore the fact that this is a progressive condition that can make me "not fine tomorrow".
They also talk an awful little about prevention and halting the course.
I am scared to get to a place where they say " not fine anymore".
Are there any proven interventions for stopping this decline and decreasing serum creatinine levels?
Thank you you so much!
dakota10462 syracusa
Posted
Do you now have CKD? My EGFR goes from 90 down into the 60's routinely depending on my stress levels.
john75639 syracusa
Posted
Back in 1985, when my protein started to show up in my urine, it went from .5, to .7 to .9 and then to 1 7 in one week.
He decides to do a kidney biopsy. Plus I had high blood pressure. He determined that I had the kidney disorder called minimum change when my proteinuria shot up to 2.0, he stated I had focal segmental glomerosclerosis
Only recently I discovered that they are a genetic disorders but I am the only person in my family that has 2 kidney disorders. I did not know what my e GFR was at the time. But my kidneys didn't start to get worse until 2011. Then in 2014, I got onto haemodialysis. At least, I knew in 1985 that I would even have to be treated as a dialysis patient in the near future.
Every person is different. Proteinuria happens to some but not all. If your urine is like soap bubbles in the toilet, then you have a potential kidney disorder. Drugs can help some people. My kidney doctor tried at least 3 different drugs to prevent my kidneys not to fail, none worked.
So don't be discouraged. But don't drink sports drinks, the contain alot of potassium and phophorus. They can speed up your kidney disorder. Only a renal dietician can tell you how much protein to eat.
Back in 1985, I was put on a no salt diet, but everythinghas some salt in it. Eventually I was told to eat anything I wanted. But I did slightly changet my diet from a vegetarian diet to a normal diet. Now I watch my phosphorus intake, which is mostly milk products. If I eat or drink them, I take a phosphorus binder called sevelamer carbonate. I also watch how much potassium is in foods and only eat those than are under 200 mg.
You have a long way before you get to the point where I am.
I always go to my haemodialysis treatments because it helps me to live.
Without it, water builds up into my body and can cause heart problems I have 2. One I had back in my 20's and got one after I got dialysis treatment.
Before I am put on a machine, a blood pressure is taken. One day my pulse was 160, they told me I couldn't get my blood cleaned and the dialysis techs told me I was being sent to the hospital based on my pulse. After entering the hospital, I was told I could have gotten a stroke with a pulse rate of 160.
So if you are worried about any problems, a kidney doctor is the only one who can determine if your rates are harmful or not.
I am not a doctor. Good luck in quest.
syracusa john75639
Posted
John,
i did all to drs.
My nephrologist says "no CKD". Nothing Wei g with your kidneys attains point.
I feel, however, that my drs. avoid telling me whether my kidneys will stay where they are (no official CKD) or they will progress to where there will be CKD.
I am continuously terrified and can't control my extreme anxiety for fear of progression. My husband is crushed and can't handle me anymore.
My urine protein hovers around normal. If I stand up a lot or late and eat more protein, it can get to 200 mg in 24 hOtherwise, it's under 150 (normal).
My my huge scare is the creatinine. Cannot understand what made it go to 0.96 most recently - it's highest I had.
I had been eating little for a few days before I took the test - and I read that malnourishment/prolonged fasting can create some ketones in the blood which can react with the assay and artificially increase creatinine.
I am am desperate to test again for a better value so I can get it in my head that this is not CKD (as dr said) and that it is not progressing.
I I have never been so desperate and terrified in my life. I almost went to the ER last night.
syracusa
Posted
So sorry for the typos, my tablet messes everything up and I can't seem to be able to edit.
LynQ syracusa
Posted
Hello,
Try leaving the testing for a time while you try to deal with your extreme anxiety. I think you may be putting your poor body into turmoil just worrying about it. Try to live a normal life eating healthily but not fussily. Try doing some things that give you pleasure for a while.Test again in a few months time when you feel more relaxed.. Most of us don't get tested so often.
syracusa LynQ
Posted
Lyn,
What you suggested would be the 100% rational approach. Trouble is I am in a Catch 22 due to my severe anxiety disorder. I can't seem to step out of this panic unless I get some number/lab-based reassurance.
Nephro said "you're fine" because protein looked good in the 16h/8h split collection (with oly 30 mg at night and 105mg during the day - total 135mg<150).
But I am tortured by the 0.96 creatinine / 72 egfr, down 12 points since last October when it came at 84. Dr. says it's just "normal variation" and it doesn't matter. I wish he could understand my mind doesn't' work this way and that it wants some solid ground to sit on.
I have these three tricks up my sleeve to explain the drop and I am desperately clinging to them. Do you think they are valid?
1. I was dehydrated?
The day before the blood test and in the morning of the test I purposely decreased the water intake. This is because I had recently measured my 24 h urine output at home and it seemed too large - around 2500-2700 ml. Fearing this would artificially increase the total protein in urine (per study linking polyuria with protein), I decided I was drinking too much and c ut back. I had made it a "good habit" to sip throughout the day, per common "best practice" but I never had more than 6-7 cups a day; this was in addition to quite a bit of fruits and veggies though. But all this resulted in 2500-2700 ml urine/24h which borders polyuria. I thought of diabetes inspidus but my urine does seem to get more colored with less water, though generally it is rather pale.
So right the day before the test I cut down on water; I may have had 4 cups total and probably less than 1 cup on the morning before the test. Who knows what that meant for my total volume when the blood was taken?
All I know is the test turned out 0.96 creatinine (highest I've had) and sodium in blood at 144, which is the upper most limit for normal - and can too suggest dehydration.
2) I had been malnourished for too many days?
As the 6 months follow-up testing approached, my anxiety went up and I started to reduce protein (and implicitly calories).
I know starvation type diet can cause ketones in blood and urine (it did happen to me before, when they tested me at the Urgent Care).
I read ketones can interefere with the assay in the Jaffe reaction when they test for creatinine and produce artificially elevated levels.
3) Prolonged activity?
I had been on my feet for two days in a row until late and night, doing house chores - for Easter Week-end. I want to believe this would count as exercise that could have further pushed the creatinine up.
Now I am desperate to retest to see if my real e-GFR number is close to the 80's, where it was last October, and not low 70's - which I hope is artificial.
Creatinine clearance was 89 - but this test is known to overestimate true GFR by about 10-20%.
Any opinion on these factors would be greatly appreciated.
syracusa
Posted
Also, I just wanted to add regarding testing: some of the values I mentioned came from testing on my own at a consumer lab. My drs. do not seem to favor repeat testing - though in all honesty, a stable picture can help tremendously someone with extreme anxiety.
The nephro only re-tested once, last October, when I first saw the protein in red/abnormal (60 mg over the limit) and went crazy with terror because technically that placed me under CKD stage 2.
With the latest protein under 150mg/24h, he maintains this is not CKD (but he tends to always add - "nothing wrong with your kidneys AT THIS POINT".
The capitalized part sends me into horrible panic attacks because in my mind this sounds like it is just a matter of time until I will be officially diagnosed as the e-GFR continues to fall.
He even speculated in the chart that it may be "benign nephrosclerosis" but when I pointed that I never suffered from cronic HBP, he said "'well, OK...I had to write something, if you want me, I can take this off".
I pray every second the dr. is right and this is not CKD, will not progress and the 72 was artificially low.
I keep looking for reports of "non-progressive kidney impairement" or something like this, but nothing shows up. It's all classic CKD where once people start losing kidney function, it keeps going down.
The fact they also can't tell me WHAT has caused the decline - so I can have a hope of acting on it and halting, is making it really difficult.
No HBP, no diabetes, no high cholesterol. Dr. prescribed nothing - not even diet.
Then what is causing it?
And if it was pneumonia that gave a one-time hit to my kidneys 2 years ago, will it stop here?
Or has the initial insult set in motion CKD and I will keep seeing drops?
Could I have undiagnosed diabetes or some insulin resistance?
Both of my parents are Type 2, diagnosed after 50.
My yearly fasting blood sugar at dr's office hovers between 84-90. A1c last summer was 5.4.
My home tester shows morning blood sugars around 100 lately - since I have been stressed out and avoiding protein (thereby increasing carbs).
But my home tester shows higher than the lab.
After meals BG rarely goes above 120.
During the day it hovers around 110.
Dr. say I don't hav e diabetes. Then what is doing this to my kidneys?
Could it have been my very late bed time over the past decade or so? Lack of sleep? The anxiety disorder?
There's' no documentation of anxiety causing CKD.
jamilul2510 syracusa
Posted
hi syracusa, hope you are well. i have read your entire thread and i fit exactly in your position, low eGFR for my age of 30, and also extreme extreme anxiety, hopefully you get this message, could you give us an update please? how are you getting on, what was your lab results since than?
dakota10462 jamilul2510
Posted
How low is your EGFR?
g15908 jamilul2510
Posted
Hi Jamilul2510 and @syracusa... I too have just read this thread and am in a similar situation and suffering with anxiety also, And wondered about any updates?
I'm 37 and recently realised looking at blood tests that my eGFR was only 68 about 20 months back, but about 7 months ago was up from that to 82 (seems quite a difference?). I realise now as it was above 60 no one said anything or reported any abnormality, but actually for my age that it isnt really normal, as with you all I'm finding this concerning and its invoking my anxiety pretty badly.
I visited a urologist about 7 months ago after I experienced an episode that in the end lasted about 2 weeks where I had frequent short urination/and a feeling like I still needed to urinate immediately after I had already finished. More often than not, when tried to go, and as a result of going so frequently due to the sensation of needing I did not pass very much each time. At the time I also had some non-visible blood detected in urine on a strip test (+1 I think they said), which wasn't present upon a retest later. I had previously had similar readings on urine tests before in the past, but GPs never seemed concerned. I also had some general back pain/muscular stiffness in lower back, and at that time was noticing I was getting stiff quite a bit in the early hours of the morning behind the right flank/lower back area - Dr wondered if possible kidney stone. I had some blood tests, and saw a urologist who did an ultrasound and flow test - all came back fine. And I was told by urologist nothing to worry about.
Fast forward and now that I've become aware of the eGFR values I'm now freaking out.