Left hanging...severe anxiety...please help!

I really sympathise with your worries over your kidney function as from experience the changes you see seem to occur out of your own control.  However the numbers you seem to be seeing are quite a ways from trouble.  If I use my own experience, then my eGFR fell as I aged, but I still felt very fit and active, and commonly was thought to be 15 years younger than my age. I had eGFR down to 51%  (Stage3) with no difficulties whatsoever, until a ultra sound scan for a minor bowel problem showed a recent development of a tumour on my right kidney.  The kidney has been removed, and my eGFR is now 28%, and I still feel fine!

I hope that maybe this puts your figures in perspective, and if you had some help with your anxieties you could go back to enjoying life!  Best Wishes, KenR

I understand your concern.  However, I really don't think you need to worry at all at this point. Many people have kidneys that don't return a 100% eGFR.  Fisrt, it is only an estimate and can be affected by many things, for example, whether you have eaten meat or high protein foods in the previous 14 hours and whether you are well hydrated at the time.  Some peoples kidneys NEVER finction at 100%.  Secondly, there can be some deterioration with age. Lastly, kidneys have huge spare capacity, so you would have to have a severe decrease before you would have any symptoms at all. Also, many people with Stage 3 CKD never progress any further.  Lots of people on the forum have an eGFR in the 20s and still feel fine.  It might be good to address your severe health anxieties though as out of control anxiety can be harmful in itself.  I wish you well.

Forgot to say that if you are taking some naturalist ant inflammatory supplements that you have not been prescribed by a doctor, do check that they won't harm your kidneys.

syracusa, many of us would love to have an eGFR in the 70s or 80's!

I have had just a sole kidney since having one removed over 60 years ago, have CKD3B, eGFR 38, high blood pressure.

I don't know where you are but here, in the UK, consultants are rarely interested unless patients are in Stage 4 of CKD.  So your nephrologist is a gem.  Trust his words and advice, and not those of the various online sites and online doctors you have visited.  Apart from one or two reliable sites, you will read a load of gobbledegook.  

The name CKD (Chronic Kidney Disease) is, according to a renal consultant I have seen, "a rather unfortunate name to describe a condition where the kidneys function at different levels, so-named in the US and one that we have to live with".  My pharmacist advised that a few years ago now, the NHS body of our Government requested that the eGFR test should be carried out on all patients having routine blood tests in order to discover whether reducing kidney function was either an ageing process or a disease process.

It sounds as though you have been extremely well monitored - you do not have a disease as such, just an eGFR which is inclined to go up and down a little, and I dare say by your next test it will again have increased.  And if you stick to a good, healthy diet, with few or no caffeinated drinks, no salt, no anti-inflamatory NSAIDs such as Ibuprofen, drink plenty of water, have some daily exercise, and keep your blood sugars and blood pressure under control,your kidneys should stand you in good stead for very many years to come.

In all your posts on other topics, it comes across that you are experiencing a lot of anxiety, and this is something that you, yourself, can address and improve.  This is essential if you are to continue to stay healthy - which you are - otherwise your body, including its immune system will be at risk of becoming unhealthy in the future.  So my advise would be to include some relaxation therapy into your day, such as Tai Chi, Mindfullness, or even simple walking - a great way to release those feel-good endorphins.     

Thank you all so much for being so kind to reply. 

Indeed, I suffer from severe health anxiety. The panic attacks I had last night are the worst yet. 

I got the referral to the nephrologist because I insisted with my PCP. I had hoped the battery of tests he ordered woukd all show "fine" top to bottom so I can find some complete reassurance. He uploads all results in a patient chart.

Unfortunately, when I saw the 24h urine in red (abnormal) last Fall, I went into complete shock and never really recovered from anxiety ever since. The nephrologist says this is too little above official "normal" to matter clinically. 

 For a few months I was a bit better wishful thinking myself into better results for follow up.  Hoping to see the egfr back in the 90s and the protein under the official upper limit of 150 mg.

But the follow up showed about the same protein level and the lowest Egfr yet.

I also paid for a 24 h test on my own during a day i had very little protein and lied down a lot and that one came back normal. 

i also so begged my nephrologist to do a split 24 h collection to see if there is indeed 

A postural explanation. He agreed but the results came back and the nurse said that "everything looks great" but didn't give me any numbers. The office hasn't introduced them in the chart yet and I wonder if they ever will. 

So now I have been in shock again for a few weeks and my husband and children are desperate. 

I am am terrified of continuing to lose function from one Check up to another and my mind seems to have locked itself up in a completely hopeless, panicky place. 

I dug up some old records from the time I was pregnant and it appears I had some traces of protein in urine early during pregnancy (before 20 weeks). Later I developed 1+ but they never said anything about it then. No preeclampsia. 

Could this be in line with what my nephrologist who says that the 200 mg is probably my "normal" and not a sign of kidney damage? 

That would take me out of the CKD diagnosis but my mind still feels terrifying, impending doom. 

My drs. Want me to get Xanax and Zoloft but I am terrified of hurting the kidney yet I can't live with these panick attacks anymore. 

Does kidney function ever recover long term? I do not know what causes this or what caused the abrupt decline from 98 to 70's. 

I am almost 100% sure it was the oneumonia but the drs. Don't want to conform or deny. 

 I also can't eat anything...have lost tons of weight....

Mrs.O - a huge thank you. I'm in the middle of a panic attack and your post is helping  a bit. 

If  I can help even one scared person with this addition below, there it is: 

I just received the 24 h protein split results from the nephrologist's office.and they were within normal range (105 mg for the diurnal and evening 16 hours and 30 mg for the 8 night hours).

For those with mild proteinuria, please keep the orthostatic/postural factor in mind. Standing up and sitting all day until late in the night can put the protein over the limit, in red (abnormal).

If anything, protenuria got a bit better or may not have been over 150 in the first place. It's certainly not zero...but I am thinking it may have always been like this since I had traces of protein early in my second pregnancy.

If only I could get an eGFR back into the upper 80's with a repeat blood test with lots of hydration and no meat the day before. 90's would be a dream.

Maybe I can allay some fears you have. My situation is different; I'm older (60), and got a shock in February. My GFR indicated a stage 3 - out of the blue, as I was always in the normal range previously.

I threw out my Ibuprofen + a bunch of other prescriptions I had accumulated. After reading this board and getting help from members, I also drank more water. I had another test done about 2 weeks after, and kidney function was normal.

For you, there is hope, as the others said. I am also a cancer survivor, and learned how to compartmentalize anxiety. For me, it's easy to do with health concerns, b/c I control what I can, then let go. If I can learn this skill, so can you.

Odd, though, since I still overthink other things.

Here's my suggestion: Practice, even if you can stop worrying for only 5 minutes. You get better at it.

- Forrest

In this day and age, it's so easy to get anxious about one's health! I also live in the U.S. and our healthcare system is totally disease centered and we are inundated with TV ads telling us that we might have this or that disease or condition and here's a pill that can fix it. Our doctors often only spend a few minutes with us during an office visit, and there can be none to little coordinated care if you have multiple health problems. My primary physician doesn't look at me when I talk and she just spends the entire session inputting info into her laptop! Doctors tend to give minimal information and many have an arrogant and dismissive attitude. It's understandable to be alarmed when seeing a number in red on a lab report. (I am so glad that my lab puts it in bold with a L or H beside it). But, it's important to not give into the fear that the healthcare system can create. Yes, you had a somewhat abnormal result, but now the further testing showed that you are okay. You don't have to do further repeated tests to see if you can reverse your GFR. My kidneys became damaged through the use of two or three medications (but the doctors never said anything about the two or more interacting), so in my opinion, being careful about any prescription meds, OTC's and even supplements is key. The first nephrologist I consulted with ten years ago when my creatinine level started increasing said to avoid OTC pain relievers, and if I must, to take Tylenol (acetomenophen). Now I am taking only one of the problem meds and so far my kidney function is at 3b and decreasing very slowly. I am avoiding the OTC painkillers, sugar, alcohol and recently have been successful controlling hypertension through diet, weight management and exercise, so no more BP meds.  I can't change what happenned to my kidneys through the past long term medication use and don't have an alternative to the one that I am still taking (it's for managing colitis). I am focusing on staying positive about the health that I have for now and doing what I can to keep it that way. I am avoiding worrying about the future of my kidney function that is out of my control. I sure hope that you can get to a place where you can do the same and be grateful for the mostly healthy kidneys that you apparently have now.

Thank you all so much for your encouraging words and I apologize if I sounded too anxious to those who have lower numbers than mine. I do agree with pepasan that I also need psychological counseling, which I will start Monday. 

My concern is also related to age.

I am only 44 and it is my understanding that my egfr should be in the 90's at this age, not 70's. 

What scares me most is that only 2 years ago it WAS in the 90's. In fact, upper 90's - 98. 

And then pneumonia hit, I recovered, and only a few months after that I saw the drop in egfr to an abnormal for age 77. My PCP reported it as "normal" and did not want to comment much on the actual change. She only agreed to refer me to nephrology the next year, when the egfr came again in the 70's (at 75) - and that's how the incredible anxiety started. 

I had some repeat tests during this time and the egfr also went up in the 80's but it never did go back to over 90 (normal for my age). For 2 years it varied between 70's and 80's but the trend is slightly downwards. 

Now I am terrified about the actual rate of decline.

Since I discovered this 2 years ago it came down to the lowest yet 72 (this April).

I am not sure to what extent this last time was also a bit of dehydration and two prior days of continued house work and prolonged standing until very late at night as we had guests for the Easter weekend. 

I want to believe this would count for strenuous exercise though it was nowhere close to lifting weights strenuously (as in gym work). Just continuously roaming around in the kitchen and staying up on my feet very late. 

After this weekend, creatinine serum was 0.96 - which resulted in the lowest yet egfr of 72. Personalized for my weight and height would still only be 77, as I am quite close to the average person labs assume (1.73 sq meter body surface). 

I also wonder whether lack of sleep can increase serum creatinine somewhat.

I have read some scant/vague evidence that it can, though this is usually not mentioned. Only dehydration, strenuous exercise(whatever counts for that) and cooked meat. 

I did have very little salmon and extremely little pork during this week-end - but very small amounts.

So I am praying that all these little things put together made it so low compared to what I tested last fall (which was 84). 

Being 100% sure that this original creatinine elevation (and implicit drop in egfr) was related to the bout of pneumonia 2 years ago, I wonder to what extent some recovery could be possible in the long term with lifestyle modifications. 

I Read infections (sepsis) can cause some kidney damage which would later set in motion CKD. 

The naturopath also insisted that I change my sleeping patterns which have been bad. going to bed at 2:00am, often not falling asleep until 3:oo am. 

As as for supplements, I am not taking anything dubious. I recently started alpha lipoic acid, CoQ10, melatonin at night and fish oil (good quality, uncontaminated). 

Naturopath also prescribed an herbal kidney support formula (with nettle and a few other things in i) but I haven't started taking it. I am sure my PCP will says"no" bc she doesn't trust "herbals". 

I also wonder to what extent reducing my already normal blood pressure could help decrease creatinine levels. 

I often test right below 120/80 in dr's offices. It's fine but kind of upper range of normal....right before the "pre-hypertension" range. 

Ultimately, I wonder to what extent improvement of kidney function is normal in those without officially diagnosed CKD. The only thing that probably keeps my nephrologist from diagnosing stage 2 officially, is my very low level to virtually normal proteinuria and perfectly normal ultrasound.

Without clear signs of kidney damage, a ckd diagnosis is not applied at 60-89 egfr. 

This is where I hang now...in this highly gray, unsure area....where I can't find full peace. My nephrologist kind of cut me off last time exclaiming "you don't have CKD" but my mind is out of control with doubt. 

I am dying to retest for egfr to confirm the latest was artificially low for me - which I can do on my own at the nearby consumer lab (yes, this is the US...where the testing craze is possible)...

But my drs would be super ticked off to know I continue to test on my own and everyone would normally advocate "leave it alone". 

Yet i I know my mind only gains some peace thorough "safety in numbers". 

I was in horrible shock yesterday and I almost went to the emergency room because of a terrible panic attach. I finally calmed down when my protein tests arrived - this time within the normal range.

i long for peace like I never have before. Thank you all. 

Forrestm,, 

I wish I was taking medication that could promise egfr improvement once stopped.

But I'm not. I Have not touched any pharmaceutical of any kind (prescribed or OTC) for almost two years - due to kidney fear. 

Drs. Insists Zoloft won't hurt my kidneys and that I should take it but my trust is broken. It was my PCP who did not even flinch when she saw a drop in egfr from 98 to 77 only for this change to turn out to be an indicator in kidney function change and not some "dehydration/age nothing" as she initially suggested.

I read reports that Zoloft, like any medication, goes through the kidneys and does affect it. Drs. Say "no, it's fine". 

I do understand anxiety can cause further damage so am trying to address it with mind/baths/walks/meditation, what not, but I am probably too much over the normal anxiety line for such methods to be effective though. 

naturpath prescribed glycine for anxiety but have not started yet.

I will see my PCP in a few hours for follow up after the horrible panic attack.

Both nephro and PCP are mostly worried about my anxiety but they don't understand that unless I get hard-core,mlab-based reassurance about the kidney function, my anxiety won't go anywhere. 

I am close to caving in with the Zoloft ....but I am terrified to take it for a few months and then see further egfr drop, and not know whether Zoloft contributed or not. 

Thank you all again for helping !