I am a 46 year old male. In Jan. 2019 my GFR was 63 - when it was checked in Early 2021 it had dropped to 27. Now only a few months later I am down to an 18. I do have Type II Diabetes but it has been controlled for several years (5.4 - 6.5 A1c). We would not have caught the GFR drop had my BP not gone insane and became difficult to control.
I have been to 2 specialists so far that have literally offered no help, guidance or even dietary recommendation (except less sodium to help the edema). I am working now to get in with Duke to see if they can offer some guidance.
Really just curious about others decline, and why mine would be so rapid. I have had an ultrasound, and they see no physical damage to the kidneys. I just really need some guidance.
As far as I can tell, I have no symptoms aside from occasional edema.
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My GFR went from over 60 to 30 in five months. If you don’t have a nephrologist and a renal dietitian, I encourage you to do that. My diabetes and bp are both managed by medication but in October of last year, I had a treatment of radioactive iodine. The thought is that affected my kidney. The diet has been challenging but I recently started cooking. That helps.Best Wishes!
If your diabetes is controlled, perhaps it is because of your crazy BP event. I dropped from 30+ to 18 over 9 months and my original nephrologist did not even seem to care. I did my own research and then told my internist she had to get me in to the Renal Center at the university, which she did. Take Jayhawkers advice, but also ask internist for a renal dietician or find one on your own asap. 30 is just the beginning of Stage 4, but it can go down quickly after that and the proper diet now will go a long way in maintaining and not dropping more. It is scary, you deserve better care and must demand it. If you are overweight, do your best to get in shape. If all your questions are not answered, keep changing nephrologists until one takes you seriously. You have to take action yourself, be your own best advocate.
This is a significant drop in renal function in a short time. You definitely need to see a nephrologist asap. While waiting for that appointment I’d schedule an appointment with my primary care internist. I’d ask thst doctor to refer me to a nephrologist AND to order regular renal panels and urine checks (for protein among other things) so we can keep an eye on my renal function. In addition I’d ask my PCP for explicit guidance regarding what I should do until I see the nephrologist. For instance, since you’re experiencing some edema, how much fluid should you drink daily? Are there dietary changes you should make now as you wait? Are there OTC medications you should not use, e.g., ibuprofen ? Are you taking prescription meds that would contribute to this decline in renal function? (Some diabetic and BP meds are more renal-friendly than others.
But the mist important thing is to get in to B see a nephrologist asap. Your PCP may need to push the referral through to a nephrologist so you don’t have to wait so many months to get in for an initial appointment.
A nephologist and renal dietician are critical. Most of the time treatment for diabetes takes priority to CKD but your situation is difficult. From my research as a patient, I suggest the following:
Stop eating all meats, poultry and processed foods (fast foods, fried foods, snacks, deserts, canned goods). Cut back sugar and salt intake. No alcohol, stop smoking. Exercise as much as you can and lose weight. Look to beans, fish and occasional egg whites (fewer calories) for protein. Avoid dairy but eat more veggies. Avoid sugar cereals but look for whole grains/high fiber such as oatmeal and use unsweet almond milk. No one but do this but you... there is no magic pill. If you need a snack eat an apple or rice cake but eat slow and don't stuff yourself.
You've seen two specialists (I take that to mean nephrologists) who have nothing to say about that level / speed of drop??
I ought to say I'm not surprised, given the frequency of people arriving in here shocked to discover their down to their last 30% function and have only been told by their doctors that they've been long since in decline.
It's difficult to believe that nothing is being done but your on here, so that's good.
If I were you I would immediately seek a nephrologist who would take this seriously. You might need to get inventive so that you can filter through them quickly. They aren't the kind of doc that you necessarily have to see face to face so broaden the net.
Buy a copy of Lee Hull's book, Stopping Kidney Disease. There isn't a better single source I've come across who will bring you up to speed on main factors implicated in disease progression - diet features heavily and his thrust is supported by the National Kidney Foundation KDOQI 2020 guidelines. They advocate the diet he does, except he found and distilled the supporting science before even the NKF. You could read the KDOQI 2020 guidelines yourself to help build your knowledge and give you action point
Start on a kidney friendly diet - read around this site for that. Meat out or cut right down, salt, hydration, low protein quantity per day (moving to very low protein + keto acid analogue should you decide to once informed by Lee Hull etc. Exercise.
Download an app called Cronometer amd track what you eat. If you don't measure you can't know what level of protein, whether to many or too few calories. It's free but for useful trend info (which you need to allow you to track things over time - the important thing) you need to pay a subscription. But it's only 30 dollars a year or something.
Hypertension is one of the leading causes of CKD, the other is diabetes. You have them both.
CKD can cause heart problems which you have with the BP problem. Have you seen a cardiologist regarding the edema? Has your PCP put you on a diuretic? Diuretics can help edema, but some diuretics also harm the kidneys.
Many medications can affect the kidneys and make your eGFR decline quickly. Have you started or increased any medications?
Do you have protein in your urine? Ask your PCP for a referral to a renal dietician. A plant based diet can be a help.
I'm presuming one of the specialists you saw was a Nephrologist? The other maybe an Endocrinologist or Cardiologist? Didn't the Neph. give you a reason for the drop in eGFR? That is their job to get to the root of the problem and make adjustments in medications and diet, etc. to improve your kidney function. 9 pts. within the year needs to be addressed. I lost 7 pts. in 3 months and got in with a great Neph. My eGFR was 28. I went up a whole bunch after his help. Mine was getting so low due to my autoimmune disease and the Neph. started me on a steroid for inflammation. That won't help everyone, but your Neph. should make a specific plan to help you, just as a renal dietician should make a specific diet for your individual health issues.
It's great you aren't have any other symptoms besides edema. Have you tried compression socks for your edema. I find they really help me a lot. I just recently started wearing them. I get all kinds of crazy patterns, but you can get them in plain black, white, or beige if you prefer : )
Best of luck getting answers at Duke. Keep us posted.
Sorry for the delay in my reply! Thank you all for your comments and guidance. I am finally getting ready to see a new nephrologist and I have been doing well on my weight loss journey. I cut out cigarettes and alcohol and have drastically reduced my meat protein intake. I have been to 3 dialysis classes (as recommended in this group) and have learned a lot about what I am going through. I have also reduced the edema to the tune of over 25 pounds of fluid. This alone has made me feel much better. Again, thanks for all the advice.
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