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Early CKD Support
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What Should I Do??? So Upset!

I just found out that my eGFR is 59 (down from 61 three months ago) And I am in panic mode! Dr. isn't concerned...my blood protein, sodium, albumin are normal. My creatinine is upper limits of normal at.97 (normal up to 1.0) I have no symptoms. I also have borderline osteoporosis and was told by my doctor to increase my calcium intake to 1200 mg daily. I've been eating several yogurts a day, some cheddar cheese and taking calcium supplements. But now I'm so confused and overwhelmed because according to the renal diet I shouldn't be eating dairy products! What do I do to protect my bones???? 😲 I do NOT want to take osteoporosis meds because of the potential side effects and risks. I am waiting to get a lab order from my doctor for urine albumin testing....I am petrified!! I didn't have a clue that all these years I've been having impaired renal function! I just turned 70 years old and have several health issues. I read somewhere that it is common for GFR to decrease with age and many doctors consider it just "aging kidneys"

Can someone please help me here? I am so overwhelmed I cannot think straight! 😢

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I also forgot to mention that my BP is good. I have normal blood sugar levels. I do not smoke cigarettes and only drink about 2 oz of wine each night. I was diagnosed with interstitial cystitis in 2009 and that has been stable but if I drink a lot of water it aggravates my bladder and causes me to urinate every 1-11/2 hours, so I can't drink a lot of water.

I do have to urinate more often lately. That is the only symptom I have related to my kidneys.

Thank you for taking the time to read all this. I’m pretty desperate for help right now 😦

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Hi, like you l had blood tests done two weeks , l had been having urticaria for last eight weeks which was the reason for the blood tests, l phoned for my results was told all normal but l went and got a paper copy from my surgery when l saw the results there was a message under the GFR result l looked up on google there was a lot of information a chart giving the reasons for the drop like you l,m female ,69 years old under active thyroid, asthma well controlled normal blood pressure not overweight, my GFR was 59, creatinine level, 87, surely if GFR is going down advice should be given to us so we can try and do something about it, it,s so frightening so l have made an appointment to see my dr to see if they monitor readings under 60 , l can,t believe patient,s get a reading and left without any explanation , so l know exactly how you feel l am going to look for diet info to see what l can do even though have a good diet already, l wish you well hope you manage to raise your GFR also, best Reguard ,s . Eve🙂

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Hi, HisLittleOne,

A 2 point drop of GFR computed from your creatinine level - which can be affected by dehydration and other factors - between labs is really nothing to worry about. I am 60 and after working like a Trojan, I got my GFR from 44 to 56 in twelve weeks. So without even trying or getting on any special CKD Diet, your GFR at 59 is a lot better than mine. You are currently at Stage 3A (45-59 GFR) and bordering on Stage 2 (60-89 GFR). Most of us in the CKD community would kill for that.

The first step is to educate yourself on CKD, its causes, and a good CKD diet - preferably vegan, but at least vegetarian.

Here's how I went from a GFR of 44 to 56 in twelve weeks: healthunlocked.com/nkf-ckd/...

So read the book and educate yourself. You will feel a lot better mentally after reading the book and physically after you start a proper CKD diet.

P.S. You can get all the calcium you need from a vegan or vegetarian diet. You don't need all that dairy.

P.P.S. When I drink a lot of water like I am supposed to, I urinate a lot too. It is natural and normal.

P.P.P.S. Most doctors aren't too concerned with GFR scores until you are close to or at Stage 4 (GFR 15-29), and by then the real damage has been done. But you are light years away from that. But since you are at nearly Stage 2, he really is not concerned.

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I agree with Beckett24. Don't stress about your results, they are good. I am 52 years old and have 10% eGFR now that is something to worry about.

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What you should do is try not to worry. Mine is that and I never give it a second thought as Dr not concerned. He Said it needs to really drop significantly suddenly to a much lower level first! Also told to not do strenuous exercise 48 hours prior to blood test and to drink litres of water before test!

However, did have all the other kidney tests to rule other problems out.

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Hi, I would suggest first of all not panic. For me, as little dairy as possible. So you might want to cut the dairy and yogurts. I watch things like sodium, potassium, magnesium, potassium. Start drinking plenty of water.

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Hi I have both CLL and PKD. My GFR has been around 34 for over two years. My life is pretty normal. I able to walk a 100LB Pit Bull two miles every day or 6K steps every day. I try to eat healthy. I was told I will need dialysis in two years. My kidneys are huge with lots of cysts. My nephrologist told me most diabetics have GFRs like mine and don't even know it. My advise is live in the moment. Worrying about what may not happen only makes the present moment horrible. Which really effects your life. I use to worry about everything. Looking back I wasted so many days I can never make up.

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Hi, Maine1963,

I'm no doctor, but to be on Dialysis you have to be well into Stage 5 CKD or a GFR of well below 15. Why would anyone tell you that you will lose 20 or more points of GFR in only two years?? That does not make sense to me, at least mathematically.

Have you tried educating yourself on CKD and adopting a strict CKD diet? I was also high end pre-diabetic to Diabetic for a number of years.

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Hi I have polycystic kidney disease . My nephrologist told me I am now loosing 10% per year due my cysts compressing the healthy tissues on my kidneys. Both of my kidneys weigh about 20lbs or about the size of a football. I am 55 y/o . Most AKPD patients loose kidney function in their 30s . I am one of the lucky ones . Blood pressure is also a huge problem . I have this under control . A year ago my GFR was around 19. With my BP down my kidney function gets better . Thanks for get back to me I hope you are feeling good Fran

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Yes, there is a natural decline with age. However, you can offset that by what you eat and drink and with moderate exercise. I eat very little dairy, do not drink any alcohol, and track what I eat. I limit sodium, potassium, phosphorous and protein. I am 77 and went from egfr of 34.6 to latest 54.3.

For the most part, doctors are not concerned with stage 3. However, many of us are. Click on the circle next to my reply, and see other posts I have written. I feel it is important to do now what they would tell us to do at stages 4 & 5.

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Hi, lowraind,

You did a genuine incredible job of going from 34.6 to 54.3 because I did not believe that was possible - I was incredulous when I read it! I thought I did great going from 44 to 56 in twelve weeks following a vegan diet modified for CKD as outlined in Stopping Kidney Disease by Lee Hull.

Would you please share how you did it, your CKD diet and how long it took? Any and all details would be appreciated.

Thank you.

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I read a lot, researched what I found online and settle on following much of what Mathea Ford says in her two books:

Living with Chronic Kidney Disease--Pre-Dialysis; and

Create Your Own Kidney Diet Plan--Build a Meal Plan for Stage3-4 Renal Disease.

In the 2nd book, she helps to calculate your own meal plan with her information for setting up your spreadsheet.

I was diagnosed with ckd in November of 2017, after my new personal physician noticed that my egfr was decreasing and creatinine was increasing. By my next visit, my egfr was 54.0 and has stayed pretty consistent since then. A couple of things that helped:

1. I have arthritis and had taken celexicob for many years. I was told to stop it immediately.

2. I have always had some problems with high blood pressure. I was told to track it nightly (I also had recently retired, so that helped with the bp numbers, also).

3. When I worked, I would go for long periods of time without hydrating. I am now drinking much more water.

Basically, I have learned to keep track of sodium, potassium, phosphorous and protein. My personal belief is that if this is what they tell people at stages 4 & 5, if I limit my diet in those areas now, I may never get to stages 4 or 5.

Hope this helps,

lowraind

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OK, thank you for sharing. Those three steps were a HUGE change and keeping track of the sodium, potassium, phosphorous and protein was also huge.

How did you cope with arthritis if you were taken off your arthritis medicine. I am just getting over a case of Gout so I have some idea what arthritis is like. I could not bear it full time.

As far as specific diet, did you go vegan, vegetarian?

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I take Tramadol 3x a day for spinal stenosis and I think it helps some. I also take Tylenol Arthritis caps in the a.m. and Tylenol Arthritis p.m. in the evening. For the most part, I can tolerate the pain. Unfortunately, at the present time, I am going through a flare and am in pain ongoing. Don't know if it is due to the weather, to stress, to diet, or what. When it gets real bad, I usually as for a course of Prednisone. That eases the inflammation.

I did not go vegan or vegetarian, although I try to keep to minimum amounts of meat. I have contemplated vegetarian, but, so far I have been able to manage without it.

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Wow, I am shocked that you had such a dramatic increase in GFR (even after the three steps you outlined) without a vegetarian diet. Imagine what your numbers would be like with it. The only way that I could cut out meat is by eating vegan burgers and vegan chicken-less (imitation chicken products). The funny part is that the vegan burgers are quite good and the chicken-less products taste better than real chicken. You just have to watch the sodium. You may want to think about trying this for a couple of months before your next labs and see how it affects your GFR. I think it would be really interesting. Thank you for sharing.

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I am having blood drawn tomorrow and see the nephrologist next Monday. Depending on how my numbers are, I will determine next steps. My husband also has ckd and he also has diabetes, and I would experience great conflict in the force if I went totally vegetarian. If I had him prepare his own meals, he would eat junk, as he lives to eat while I eat to live. Not easy!

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By the way, I do have Hull's book. I was following each chapter as he wrote them. Frankly, I was overwhelmed by all of the information. I may go back to the book, but for now, I find Ford's books more in line with my own thinking.

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I think you have nothing to worry about. First, creatinine of 0.9 is wonderful. Normal creatinine range is usually between 0.7 - 1.2. So, you are right in the middle of normal! eGFR - anything greater than 60 is also normal. A drop of one point could mean that you were slightly dehydrated when you had your labs done. GFR is also based on your age, sex. etc.

You should be speaking to your doctor regarding your concerns. You definitely need to be taking supplements for osteoporosis, but your doctor needs to tell you his reasoning. I would make an appt with my doctor regarding my kidneys and osteoporosis.

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Hi.first of all your in a out of control panic...calm down! stress is a bigger killer kidneys than most things..Keep red meat very low intake..avoid pain killers..drink plenty of water..take added salt out of food..avoid to much chicken 50% saturated fat!...eat lots of fruit..and allso be aware that egfr can vary from month to month...I had 52 years of kidney disease end in a fantastic transplant...I had about 50 % at 6 years old and made it last 52 years so please dont panic ..And most important of all is do a lot of this😊😊😊😊😊😊😊😊😊 regards chris

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Thank you so very much! ❤️ That was sooooo encouraging to me!

I have general anxiety and something like this news just tips the scales for me. But I am trying to learn to relax and trust God and not worry....easier said than done, but I'm working on it!

I've already cut out salt and drinking more water, trying to monitor everything I eat to minimize sodium, potassium and phosphorus....big big changes for me! I'm having another eGFR done in a month, so hopefully it will be better....and trying NOT to stress out and obsess over it 😧

thank God you are doing well ❤️

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Glad to help😊

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Hi Little One - from what you say, and I do understand your concern but I wish I had such a good egfr, at 70 you are doing extremely well so, whilst listening to the specialist's advice, I wouldn't worry too much about your kidney function. I'm 69 and mine is at 39 egfr, due to an acid surpressant drug the doctor prescribed to me for heartburn, but it was 60 egfr before I took the drug and that was when I was 60 years old and the doctor didn't bother to tell me about it, because it's considered 'normal', or not a cause for concern, to have an egfr of 60 at age 60. I eat loads of dairy and potatoes etc but I avoid sugar and salt other than in natural forms. I wish you all the best and try not to worry.

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Thank you so much...your comment was very encouraging! I hope your kidneys do not decline. This is such a nerve wracking issue 😟 But I'm doing the best I can with my diet, and will be getting a referral to the nephrologist. Blessings to you ❣️

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