Hello, My name is Mari, and I have been lurking here for a few days, and I am ready to jump in with a question.
My GFR was 68 in June 2019, in 4 months it has dropped to 55. I just selected a new PCP in June 2019, and we started with a complete physical with bloodwork. I am a bit disappointed that she did not mention my GFR in June, because 3 years ago it was 99. I had my thyroid removed 6 years ago, and have been pre-diabetic for 15 years, so my focus has always been my Glucose, A1C, cholesterol levels. I had no idea what a GFR was! I remember her vaguely stating she wanted to check my kidney levels, soon, but again my GFR was not on my radar. Its on my radar now, and I have been reading obsessively here, DiVita, and a variety of sources, I met with PCP today, and she gave me a referral for an UltraSound, reviewed all of my supplements, and told me to STOP taking everything except my Iron tablet and Melatonin. *I have been taking a fair amount of supplements all of my life.* I am going back in 2 weeks, and she is going to check ALL of my levels again. The plan is to have my levels checked every 3 or 4 weeks, for the next 2 months, to see if my levels go up. I had Stage 1 Thyroid Cancer 6 years ago, and had my Thyroid removed, and I wonder if there is some connection, as I have never had kidney issues before. I am following a plant based renal diet, I am watching my salt, drinking a lot more water, because I believe I have been fairly dehydrated before my recent Bloodwork. I am used to not drinking a lot of liquids during the day, and drinking more in the evenings, THAT is changing tomorrow. I asked about seeing a Nephrologist, based on the sudden drop, and my PCP stated, that these are the same measures a Nephrologist, would take. Taking me off all supplements, ordering an Ultrasound, decreasing salt and increasing water, and following a Renal diet, are first measures. I am going along with this for NOW, if my levels have not gone up, I will ask for a referral to see a Nephrologist, in 2 weeks. I call this my action plan. Does this action plan make sense to you? Should I have pushed to see a Nephrologist ASAP? Why don't more PCP's ALERT us, when are levels are in the 60s? I am angry nothing was said to me in June, from what I have read, this is fairly common. I asked my PCP and she said they are normally not concerned unless the levels drop below 60!! That sounds insane to me, but at this point I am moving forward. Thanks for reading, I am reeling from finding out I have CKD and levels in the 50s, 5 days ago. Any advice will be appreciated.
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MarBea
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Hi and welcome to the community. You are on the right track. Just know that you are lucky in that you have found out where your numbers are at a very early stage. When I was told I had CKD, about 28 months ago my eGFR was 32. The numbers you have are just a snapshot of the time your labs were drawn. Be more concerned about the average of your GFR over time. By following a kidney-friendly meal plan designed for you, exercising, and watching your medications and dosages, know your average. My GFR from August 5th of this year was 57, however, my average over the last 28 months has been 49. One thing I have learned is to be careful for the 2-3 days prior to your labs. Don't overdo exercise, if you are sick or just getting over being ill delay your labs for a couple of days. Use a spreadsheet to track all of your lab values and you can spot any trends and then ask your physicians the questions you need to be proactive.
Many folks here in the community will tell you that they weren't informed early enough about having CKD. You can still raise it and control it if you are diligent. There is no cure for CKD but you can slow the progression if you are aware of the numbers and are careful. I use drugs.com to set up an account (free) and list your medications. Watch your dosages and the summaries you receive will let you know about any medication alerts that can impact you. Being aware and asking your doctors about certain meds and dosages is critical to avoid any health issues directly related to medications. You will learn that supplements should only be taken when approved by your physicians. Most supplements aren't regulated and can be harmful and cause your lab values to change and not help you in any real way.
I also use labtestsonline.org to understand what each lab is for and that helps me understand why my physician is ordering it. I then can ask questions and find out their thinking and not rely on their telling me.
Finally, ask for a referral to meet with a Renal Dietitian. When you meet bring your last years' worth of lab values and the RD will help you design a kidney-friendly meal plan for you based on those numbers.
Welcome. You seem to have a good handle on what to do. Most doctors do not advise seeing a nephrologist until late stage 3b or 4. You are stage 3a. Continue having labs drawn to see if there is any further change. And it is true, most doctors do not do anything more until later results indicate further decline.
You are doing the right thing with drinking more water, stopping the supplements and educating yourself on diet and nutrition. Seeing a nephrologist and a renal dietician are good plans.
The reason that nephrologists aren't concerned about stages 1, 2, and 3 is because they make their money from dialysis centers, not doctor visits. If they had a financial interest in keeping you off dialysis, they'd be whistling a different tune. Sorry about the cynicism, but it happens to be a reality.
I realize your cynicism is probably based on your own experience. But it is not the truth. First of all, not all doctors practice the same. Secondly, saying all doctors are financially connected to dialysis centers is incorrect as well and not a reality.
The truth is that kidney function declines naturally. Also, there is little a doctor can do for any one with stage one and two other than to tell the person to be aware. By stage three, unless there is a medical reason such as a tumor or other health condition, there again is little a PCP doctor can do. It is up to the patient to decide if they are willing to change their diet and lifestyle. Most doctors focus on diabetes and high blood pressure first in order to control kidney decline.
I do agree many people are not made aware of CKD until stage 3. I think that this is changing and with strong patient advocacy being tested for healthy kidney function will become more common.
I hope you can someday become less bitter because that energy is very harmful.
Bassetmommer, you're a darling, but please don't act as if my cynicism isn't well-founded. Read the following and then tell us what you think. There's are scores of similar articles out there if you remain skeptical.
It happens that I agree with Marvin: My(?) nephrologist at the VA won't even talk to me anymore. At my last visit, he informed that I have stage 4 ADPKD , and that there is no treatment and no cure. Immediately, I told him that I agree with there being no cure but I had been to China for treatments, and that they had been treating kidney disease for almost 4000 years and where had he been? So, either he was unacknowledged or he lied to me. Even here, in USA, there are many treatments, mostly diet and that counts. Maybe someday, the FDA, sometimes called the "Federal Delay Agency", will allow American medicine to catch up with the rest of the world. It is only HUBRIS that keeps that from happening now. After all we are the new kids on the block but all puffed up with self importance. Am I cynical? Yes, self admitted.
I was at Stage 3 for many years back in Milwaukee and was told I did not need dialysis. I had to move to a different town in Wisconsin and dropped to Stage 4 , then to Stage 5, then back up to Stage 4. I am now on dialysis but wonder if I really need it. I don't agree with the numbers up here. I feel better when I don't go and just recently, did not go for 4 days straight and the technicians were amazed that I only gained 1 pound, no fluid build-up and so on. I am on a roller-coaster. Something does not seem right to me. What do you think?
I'm very sorry to to say, but I'm not even remotely qualified to give advice as to your specific case other than to suggest running it by a different nephrologist. You might also want to do a LOT of research to see if dietary changes may raise your creatinine levels. There are a couple of ANECDOTAL cases of folks getting off dialysis by drastically altering their diets. Wish I had better advice.
As one nephrologist told my husband, they have so many other patients who are so much worse. Well, if they let us know sooner, and educated us sooner, they might not have so many who are so much worse, and as Marvin8 said, that's how they make their money.
Mari, It sounds like your PCP is competent. Most of us are dealing with a GFR far lower than yours if that's any consolation. Mine is 21. Listen to her about the supplements. I take only the supplements my PCP has okayed: a vitamin and occasionally (!), melatonin and sodium bicarbonate tablets to keep my pH tightly in check. My pH is checked every morning. Often neglected, it has played a vital role in my well being. Plant based diet will probably do you well. I am switching to a Vegan lifestyle myself, which my PCP has okayed and it is an adventure! Read up on Star Fruit. I really like it but not everyone is aware that it contains a neurotoxin that can be really harmful in the kidney disease community. My goal is to keep DaVita and the like far, far away. Their main business is dialysis and I question their diets that include meat. good luck with your quest and say in touch.
I think you have found a great PCP. And she is right and doing some of the same things a nephrologist would do. First you have to remember that eGFR is just part of the picture. It is but an estimate of how well your kidneys' filtration system is working. Also need to check your creatinine, BUN, potassium, magnesium and urine to check for protein, wbc, rbc, etc. A test once a year doesn't do it. Your doctor is doing the right thing by checking your levels every 3-4 weeks to see if there is a trend. If you were somewhat dehydrated when you had a blood draw, that does effect the results of your GFR and creatinine. But you should drink water all day long, not 32 oz right before a blood draw. You want this to be a true number as to where your kidneys are at. Drinking too much water right before a test won't show you and your doctor a TRUE value either
Dr. is also being cautious by ordering an ultrasound. That is the easiest way to see would if there is a blockage or if you might have a kidney stone. That can be surgically corrected.
Mr_Kidney is right that the best thing you can do now is to learn all you can about CKD. He gave you some good websites to become better informed. Bassetmommer also gave you the Davita site. You can take kidney classes in your area, learning info that would be very helpful.
MarBea, There has been much good information shared above. I'll just add one thing: balance. When I was first diagnosed I went way overboard; cutting sodium to almost nothing and drinking way too much water. I almost landed in the hospital because I was close to seizure territory! I'm at a good place now (stable in 3a) but in my efforts to do everything I could I nearly damaged myself. Call me an over-achiever
Whew! Glad I'm not the only one. I think for the newly diagnosed who are somewhat panicked and want to do all they can for themselves there is a risk in stepping into practices that are unsafe. It didn't help that when I told a few people at work about my diagnosis the immediate question was, "When do you start dialysis?" I was stage 3a!
My PCP said the same to me several years ago; they don’t get too alarmed until our eGFR falls below 60. Plus they need to see that confirmed over a few lab tests meaning this can go on for several months.
My nephrologist said that most nephrologists would like to see patients when there has been a sudden and noticeable change (drop) in renal function but that most PCPs don’t focus as much on sudden declines in function; rather, they tend to focus solely on the eGFR level to determine if they will refer you.
That being said, I was referred to a nephrologist following a sudden drop in my renal function that did not rebound. I still had creatinine of 1.1 at that time and eGFR of 49. The nephrologist I saw ran labs including a check for protein in my urine. No protein in my urine and nothing out of the ordinary with my labs other than the lowered creatinine level and correlating eGFR level. I was also anemic with hemoglobin coming in at 10.2 at that point. My potassium had been slightly elevated but was bouncing around. He happened to catch it in the normal range. So he thought the slight potassium elevation was due to a blood pressure medication I was taking at that time.
The nephrologist didn’t think I would “run into problems as I aged and I would likely never reach renal failure...” He didn’t schedule a follow-up appointment. My PCP was noticeably frustrated in my subsequent appointment saying, “That didn’t do any good!”
18 months later I had moderate anemia and consistently elevated potassium. My creatinine had increased to 1.2-1.3 with eGFR ranging from 45-48. My anemia was worse with hemoglobin coming in from 8.5-9.0. I was referred to an oncologist to check for cancer. Thankfully that came in showing no signs of cancer. I was also sent back to the same nephrologist. He again ran the same labs. Once again he found no protein in my urine and everything else was essentially normal other than my creatinine, eGFR and BUN. Of course my hemoglobin was low. He started me on procrit injections and tried an iron IV. The nephrologist was again not overly concerned. I was by this time following a lower potassium diet to keep my potassium in check.
3 months later my renal function suddenly plummeted into Stage V. My creatinine was 3.65 with eGFR of 13. My BUN had been bouncing around. This was the second sudden and major plummet in my renal function. This time the nephrologist took notice and moved into high gear. Unfortunately he was only able to pull my renal function back to creatinine of 1.9 giving me an eGFR of 28. So my renal function has suddenly plummeted from
Approximately 48% function to 28% function. The first plummet leading to my first appointment with this nephrologist had led to a drop from approximately 95% function to 48-49% function.
My renal function stayed stable at 28% for several years. It then , again, suddenly plummeted in January of 2017. At that point my creatinine came in at 4.65 giving me an eGFR of 9. By this point I was on extreme potassium restrictions and my anemia had become severe with hemoglobin 5.6 when untreated. I was receiving both procrit injections and a medication called auryxia three times daily fir my severe anemia. I had also been placed on furosemide and a different blood pressure medication. I was experiencing very low blood pressure continuously and sudden plummeting blood pressure 5-6 times daily. (It would suddenly plummet to 68/48 ... I never fainted but certainly felt very poorly.) I was just told to drink ice cold water when it would plummet.
There has, again, been a modest improvement in my function since the plummet in January of 2017. My creatinine now typically comes in at 3.0 with an eGFR of 16. However, it bounces around some. It often comes in slightly higher with the creatinine, eg, 3.35 giving me an eGFR of 14. My BUN has elevated to as high as 75. I’ve shifted to a vegetarian diet over the past 3.5 months. That has resulted in an improvement in my BUN. It has come in as low as 47. (I just had new labs yesterday so am waiting to see how they come in with everything. I’m hoping for a little more improvement on my BUN.)
My parathyroid data has finally elevated sone but my calcium is still in the normal range. My current nephrologist (I have recently switched and am very pleased with the care I’m now receiving) has started me on a medication to pull my parathyroid data back in check,
So here I am, in renal failure since January of 2017. I’m still not on dialysis. I’m feeling reasonably well most days. I’m still working full time. Of course I’m prepared to start dialysis when the time comes. I’ve decided to try PD dialysis first. I’m currently undergoing transplant eligibility testing. I’ve just got one test to go with that at this point, a colonoscopy which is scheduled for this Friday, Oct 18th. My cardiac data came in looking very good. Everything was in the upper end of normal or slightly better than normal with that data. The vascular imagining throughout my body was all in the normal range. All my blood labs (16 vials of blood drawn) came out in the normal range. So, I’m guardedly optimistic that I may get good news with the transplant eligibility testing. However, I’m still waiting for the final appointment with the transplant center with regard to all of this. I am ready for whatever the transplant center will need to tell me though. At this point I’m just so very thankful to know that I don’t have other serious issues with my cardiovascular system.
So, as you can see, being referred out to a nephrologist earlier may really not make much difference; it certainly didn’t make much difference in my case. However, there are others participating in this forum who have seen major improvement in their renal function when they start working with a nephrologist. That may certainly be the case for you🐶
If I was in your shoes, I’d press for a referral to a nephrologist. I’d also do my research to be sure the nephrologist is a good one. I’m still not sure how good the first nephrologist I saw actually was—I’ve definitely had better care with my current nephrologist.
Nevertheless, as Miya Angela said, “We did what we knew to do then. When we knew better, we did better.” So no looking back; no regrets. I have certainly done my best to manage my CKD. I’m finally past the high stress and anxiety I’ve experienced with all of this. I realize that I couldn’t have done anything more or better than I’ve done. Consequently, I’ve committed myself to making the best of my circumstances and moving forward regardless of the path I will find myself traveling.
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