I have stage 4 CKD and have been going to a nephrologist for several years now. My eGFR has begun to dip over the last 6 months or so, from aroud 30 down to 25. That doesn't sound too bad but it's worse than it's ever been.
I was concerned so I started reading this forum and then I was shocked. My nephrologist has actually done very little other than read lab reports and prescribe blood pressure medicine. I knew I should be careful about the amount of protein and so on, but most of what I know, I learned on my own. When I asked what kind of CKD I had, he just said it didn't matter.
He has never offered any other medication except for iron supplements for anemia.
In this area, no other nephrologist takes Medicare that I'm aware of and I have no other insurance, so I am changing to a new PCP (my nephrologist was also my PCP)
All that to say I don't know exactly what to tell or ask the new doctor. I don't want to "dis" on the old doctor but I need the new doctor to understand the situation. Are there certain things I should insist on? I want to ask him for a referral to another nephrologist, but maybe not at the first appointment.
For some reason, I can't quite get my head around what to do.
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I am 78 years old and diagnosed at CKD 3b 4 years ago. My GP put me on a CKD diet and based on eGFR and other blood work levels. I am restricted on phosphorus, potassium and sodium. My RBC is in low range, as is vitamin D and too have anemia. Our bodies as seniors have different requirements. I also take a men's 50+ multi vitamin, vitamin d and omega 3. It is difficult to find a Doctor who is more communicative on ones disease/condition , especially on Medicare. Make a list of your concerns and be watchful of your blood work. If your blood work is available on the health portal, print copies, if not request copies from your current Doctor and take to new Doctor. Davita offers a class on Chronic Kidney Disease that is helpful. Here is a link for some information on CKD kidneyfund.org/kidney-disease/
Thanks for the link. I have read quite a bit about kidney disease online so I'm not totally at sea as far as that goes. It's just the doctor part that I have trouble with and didn't realise what he should have been doing for me.
I can make copies of my lab work but the doctor might have access to them, since he's part of the same health care system.
I take a multivitamin and fish oil, as well as lutein and D twice weekly. There is a lot to explain, but all that seems to be ok. My bloodwork shows acceptable levels of everything, but I'm a little low on platelets. No anemia now since I've been taking iron. I hope the new doctor has access to it all, but I will print out copies just in case.
Every single time I have labs done [for any doctor] I have the lab also send me a report, Just a suggestion for you, it helps me to keep track of all my numbers. I love my Nephrology team. I am, apparently, one of the luckier kidney patients [I am in Massachusetts]
Good idea. I am also able to get my labs from a health portal on line.
WOW! There is so much in your post that I had to read it several times to know where to begin. If you like one doctor to do all of your health issues then stop reading this now and go on to the next post.
OK, If you are still reading let me start by saying this is the time for specialists. If you are having blood pressure issues see a cardiologist, a good one who is aggressive. If you have CKD then see a nephrologist, also an aggressive one who will give you the best medical advice and accept your decision and treat you accordingly. Find a PCP who will handle all of your other health issues and keep all of the professionals (including other specialists) on your Care Team informed. My Care Team consists of my PCP, cardiologist, nephrologist, urologist, ophthalmologist, optometrist, podiatrist, dentist, renal dietitian and when needed a general surgeon. If I had a nephrologist like the one you had I would also be contacting an attorney who likes to sue doctors who are irresponsible/incompetent.
If you want to find physicians in your area or nearby I'd recommend you use healthgrades.com/find-a-doctor That site will also let you know what insurance they accept. I'm in a small town and have to drive 45 minutes to get to my doctors and I've yet to come across any physician that won't accept Original Medicare. They also accept my secondary insurance that covers what OM doesn't.
Controlling your protein intake is only one part of what your kidney-friendly meal plan should encompass. You should also be controlling your sodium intake to help your blood pressure. In addition, your phosphorus, potassium, and calcium should also be under control. That's where a good nephrologist will refer you to a renal dietitian. Bring as many of your previous labs with you and develop a meal plan that is based on your numbers. It can be vegan, vegetarian or have some fish and poultry if you prefer. No red meats, processed foods, etc. I had to travel 2 hours to see a renal dietitian. Two visits and then we handle any significant changes by e-mail. Usually, those changes are minor and temporary.
Be sure any medications you take don't have a negative impact on your kidney function. I use drugs.com to check those out. You can set up a free account, list all of your medications and get updates on any interactions and changes/recalls with medicines.
If you relay the correct information to your new doctors it is not "dissing" your old one. You have to be open and honest with your doctors. Be sure to let them know what you expect from them and that any medical decisions will be yours to make and that you expect them to go along with your decision once you have heard their advice. Run, don't walk from any doctor who will not agree to that.
I'd also use the attached link, (see below) to find the possible causes of CKD. It may in fact be your high blood pressure as that and diabetes are the two leading causes of CKD. You can develop the questions based on your reading there, plus your dissatisfaction with your previous physician. I also keep a spreadsheet of my lab values. Across the top, I list the date and ordering physician. Down the left side, I list the name of the test and in each corresponding box, I put in the value. Each test that is above the normal range I highlight in one color. Each test that is below the normal range I highlight in a different color. If it is within the normal range I leave it alone. This way I can see at a glance where an issue or trend is developing.
When I visit a new doctor I bring along a flash drive with the spreadsheet and let the doctor view it to see where I've been and what issues I've had to deal with.
If nobody has told you the GFR (along with all other lab values) is just a snapshot of that time. GFR can and will fluctuate. Exercise must also be consistent. That's where both my cardiologist and PCP come in. I get their opinions on what I should be doing and when to increase or decrease any activity. I usually walk, bike, or hike, and when bad weather hits I don't take a day off, I use an incline machine.
Find yourself some professionals who will keep you informed and up-to-date on your health.
I wound up with a nephrologist as my PCP because my old PCP retired and I didn't like the other doctor she recommended. This has only been for the last few years.
I appreciate your answer! But I am not very detail oriented over a period of time. I rely a lot on printed information from the doctor, as bad or good as that may be. My high blood pressure is caused by my kidneys, I have been told several times, and my heart is healthy The fewer doctors I have to go to, the happier I am.
But the fuller picture is this: I have wet AMD in my left eye, cataracts in my right eye. I have an opthmalogist who is going to do surgery within the next few weeks. I have had three cancer surgeries, the last one about three years ago. I am on oxygen 24/7 so I can't do a lot of normal exercise, which I know would help overall.
I am hypothyroid and that hasn't been checked in awhile, so... I do think I need to make a list for that doctor! Thank you
I have HBP as well as T2D. Diabetes is what caused my CKD. I've also had cataracts and due to AMD, I've lost the central vision in my left eye.
If you continue to rely on the information you get from your doctors, be sure they are giving you the best advice they can and will treat you as you wish.
Stage 4 is a critical time to take charge of your healthcare. Best of luck.
Okey, first, you do need doctors who will work with you and focus on stabilizing or slowing the progression of your CKD. It’s important that they also treat any underlying conditions that have caused your CKD, e.g., diabetes or hypertension.
My first nephrologist was good overall, but my second was not. He simply watched my labs, made no changes in my meds as I developed a hyperparathyroid condition as a side effect of my CKD, and literally waited for my data to deteriorate enough to place me on dialysis. He listened to me talk about PD dialysis in every appointment over the year I saw him and yet NEVER mentioned that he doesn’t prescribe PD dialysis. When I finally got him to tell me what he planned to prescribe for my dialysis treatment, he said firmly that he prescribes in center HD dialysis only. In addition, he would force me to use a dialysis center that is only open 3 days a week. I’m still working and plan to continue while on dialysis. He knew that. When I mentioned that I wouldn’t be able to keep working as that dialysis center was only open MWF and so would knock out three of five work days for me, he literally shrugged his shoulders as if to say, “Not my problem.”
I walked out of his office, came hone, logged into this forum and described the situation. I wanted ideas regarding how to find a nephrologist who would listen to his or her patients and work with them AND who would prescribe PD dialysis.
What a difference a good nephrologist makes! My current nephrologist immediately referred me in for transplant eligibility testing. He also immediately began treating my CKD based on my data. He made two changes in my medications. My eGFR increased from 12-13 to 15-17. It typically comes in at 16 now., and this is over a year after leaving my second nephrologist. I’m still not on dialysis and by now have been in renal failure for three years.
My hyperparathyroid condition is under treatment with my data now back in the normal range. I no longer have to follow a low potassium diet so I can eat vegetables again as long as I stay away from the really high potassium vegetables. I’m feeling and functioning MUCH better. My current nephrologist does prescribe PD dialysis and will do so for me when it’s time. He’s also open to prescribing in home solo HD dialysis.
As I said, what a difference a good nephrologist makes!
In my first appointment with him I talked about my treatment goals as well as my expectations from all my doctors. I then shared what I viewed to be my responsibility to assure that my doctors’ treatment plans have the best chance to work. Finally, I asked what data he would like me to bring to appointments to give him a good picture of how things are going for me at home.
I had my lab data sent to him in advance. I also sent him a self-introduction as well as my questions in advance through my patient portal. If there hadn’t been a patient portal, I would have brought hard copies of this information with me to the appointment, a copy for myself and a copy for him.
In my self introduction I shared what I do for work, my marital status and so forth. I also told him what matters most to me. Any treatment plan he develops should not only address my medical needs but should also support my quality of life goals, so to speak. I love my job. I will make treatment decisions based on whether I’ll be able to continue working or not.
I didn’t talk about why I left my second nephrologist; rather, I talked about what I expected from him should he become my new nephrologist.
Let us know how it goes as you pull together your medical team. It’s absolutely worth the effort!
If he told you "It doesn't matter." when you asked for the specific cause/type of Kidney Disease, that would sound an alarm for me.
Regarding your current course of treatment, I'm also stage 4 (eGFR of 26 at last count) and my nephrologist is also limiting me to BP meds (lisinopril and amlodopine at this time) which has been working ok to stabilize things. Since I'm at this stage with IgAN he explained to me that it doesn't make sense to go the steroidal route since there were no signs of crescents in the biopsy thus it doesn't 'appear' to be inflamed. The more aggressive treatment would only cause more harm at this point is better reserved for post transplant.
The reason I mention this is a roundabout way of saying your doctor might be right not to treat this too agggressively, but it really depends on the type of CKD you are dealing with. The fact that he didn't find it necessary to share that piece of information with you would be rather off-putting to me.
Hopefully you're able to find a nephrologist in your area. My PCP originally referred me to my first nephrologist who is in the same building as him. I then decided to go to another nephrologist (the one I'm with now) and did not need a referral from my PCP to go to him. Not sure how it works with your insurance.
I only have Medicare, so it's not easy to find one without a referral and maybe not even with a referral. It could be that his treatment is right for me. I never thought of that. Even if that's true, I need another PCP and probably another nephrologist soon.
I would definitely keep my options open as much as possible at the very least. Even if you don't make a change it's not a bad idea to have an eye towards what else is around you.
What has worked for my mother has been A renal conscious diet, rena-vite (kidney friendly vitamin) and a strict keto diet. She is doing peritoneal Dialysis now but her labs are coming back excellent (for someone with CKD) The strict Keto diet will have a lot of people questioning your methods but a strict keto diet consists of low protein and healthy fats (not animal fats) which are kidney friendly. You will still have to adjust for potassium and phosphorus content of course. After a couple of months being on keto my moms A1C was in a manageable range where they wanted to take her off insulin. There is bad that may come with the good though so if you try the keto diet consult your doctor first. Keto isn't for everyone. As for her anemia there are two forms of iron you can take into your body, Heme and Non Heme. Heme iron is from animals and is absorbed much better than non Heme . I periodically gave my mom oysters which had the highest amount of heme iron with minimal protein then started her on "one a day prenatal vitamins with iron" Her labs for iron are good now actually slightly elevated so I have changed her prenatal vitamins with iron to 3 times a week. If you decide to take a non heme vitamin supplement be sure it contains vitamin C to help with absorption. Everything I'm writing to you is from my own account. I am not a medical professional or practitioner. I just thought I would weigh in and perhaps give you a direction you could possibly try. Hope all works out for you.
If you can not find another Nephrologist who takes Medicare then be sure to communicate to your new doctor that you want to be informed of all treatment options and reasoning for or against them. Compile a list of concerns that you have and then ask the doctor to review them. CKD is different for all of us in more ways than one. How it manifests in you will not be the same as another. So while these forums are awesome you must be careful and not be non compliant with what your doctor says. If you disagree with something they prescribe or don't prescribe insist that they explain to you why and keep records.
Insist he or she be more hands on,more involved in your care.theres nothing wrong with wanting to change your nephro if he's not actually invested in taking care of your health first visit or no.
As someone else posted, if you are new to this please consider getting more tests, as creatinine is a weak indicator of kidney disease particularly if you are athletic and carry a bunch of body mass. For example, a creatinine level of 2.0 could be considered normal in a 240 male body builder, but a creatinine level of 1.5 could mean end stage kidney failure in a small 70 year old woman. There is another better indicator that should be preferential for determining GFR and that is cyastatin C. My creatinine has been up around 1.8 for the past several years although my BUN levels are totally normal. My doctor says i'm in stage 3 and I completely disagree since it is based on stupid creatinine which is a by product of broken down creatine phosphate from weight lifting. Hope this is the case for you as well.
I could wish so, but I'm afraid that it's not. I am not able to exercise to any great extent due to oxygen needs after lung surgery. My serum creatinine is 2.06, BUN is high, too, at 36, so I can't argue with that. I have had tests of various kinds, it's that the interpretation is missing. Thank heavens for the internet!
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