Hi all. 44 year old white female stage 3a. Diagnosed January 2021. Just had a kidney biopsy last week. Don’t know the results yet. I’ve been experiencing a lot of symptoms of later stage ckd (based on what I’ve read). I’ve definitely been retaining water. I have anemia. I’ve been getting leg cramps mostly at night and during sleep (disrupting sleep). It’s on my list to discuss all of these things with my doctors. But before I do I want to educate myself so I don’t walk in blindly. Can you all share your experiences with these problems please. Examples... otc or natural remedies, prescription medications, diet, etc.
Another question is that I noticed that cholesterol levels were off and I have already brought that up to my nephrologist. He said that he doesn’t have anything to do with that and that I should bring it up with my PCP. So how do I know what to address with each doctor. They all seem related to my CKD so it would seem important to discuss with my nephrologist but I don’t know. What is your take on which doctor to address certain things with?
Thanks in advance.
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JaimieL
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I’d also like to add that I asked my nephrologist if I should start a kidney friendly diet. He said that it is not necessary to do that yet and just to cut down on salt and to drink more water. The only meds I am on are fish oil and vitamin b complex.
You should have your vitamin D levels checked as they suffer with CKD. I started a kidney friendly diet at 3b and have been able to sneak up into 3a and hold there, just. By accident my cholesterol levels that were always extreme have dropped significantly. I don't drink significant amounts of water but do watch the colour of my urine which needs to be in the clear to light straw colour. When it gets darker then increase the amount of water you drink as you are not keeping the kidneys flushed. One major contributor to kidney damage is sugar substitutes and dark colas. I make it a habit to check all prescription drugs fact sheets for side effects as Dr's tend to mitigate your kidney health without consultation, thus effecting your kidneys further.The only remedy for your kidneys is you, diet and lifestyle changes will affect your kidney performance. I find everything in moderation and strict adherence to my diet is controlling my kidney function as best as I can expect. Most of us tend to panic initially but just remember it is a disease not a death sentence, at stage 3 it i a warning to make some wise choices and take action.
If you do some research it is pretty easy to sort a kidney friendly diet yourself. What I do is have my bloods checked every 3 months and depending on the results GFR being up or down my diet is amended accordingly. That is I stop the wandering from my diet or eat a little more of the foods I shouldn't. At 3b there is some tolerance still with diet. you still have half your life to live so keep that in mind as you move forward.
I need to add to my list of frustrations. I called the nephrologist today and spoke to the nurse. I explained to her that I have anemia as a new diagnosis on my case notes. I explained to her that when I saw the doctor I told him that I was feeling weak and fatigued and he just wrote it off. Later when I left the office I saw the anemia diagnosis. I asked the nurse why the doctor did not address this with me. She said I should address it with my primary care doctor. Why do I even have a nephrologist???? I don’t get it????
Hi JaimieL. I can understand your confusion regarding doctors. I'm a caregiver to my husband, a diabetic, who is now on dialysis. In my husband's situation, he has a team of specialists supporting him and that team is watched over and monitored by our "primary doctor" who happens to be a GP (general practitioner), our long-standing family doctor. My husband's grouping of specialists involve a cardiologist, a gastroenterologist, a urologist, a nephrologist, and more. While the specialists are hyper-focused on their special areas, our GP sees the entire person. As such, our GP receives all the reports and labs requested by the specialists on my husband and, if not, we make sure to give him copies. He serves as our referee and coach. Apparently your nephrologist felt your anemia issue fell outside his purview in this instance. (Anemia can be caused by many things other than kidney disease.) So this would be an excellent time to give your primary doctor a call and ask for direction. S/he may take care of it then and there or send you to another "specialist" who can work with you on it. A good and caring primary is truly worth his/her weight in gold. Wishing you success in tracking down the reason for your anemia!
Thanks Darlenia. That actually makes a lot of sense. My frustration is uplifting. I wish my doctors would have explained that to me. But thank goodness you answered. I’ll make an appointment with my PCP stat.
Hi and welcome ! I think we’re all SO worried at our initial diagnosis and don’t get the support we need ( this could be simple such as a leaflet) I was diagnosed in Nov 2020 with an eGFR of 51 and following advice on here, read Lee Hull’s huge book “ Stopping Kidney Disease “and went whole foods plant based diet. I’ve always drunk loads of water and no idea why I have CKD. I stick to not eating animal protein but occasionally have some more processed foods when eating out, such as plant burger. My eGFR has gone up to 73 in April and I’m hoping it stays high !
I too am 3a. I have a series of doctors as I also have cancer. I see a primary care, cardiologist, urologist, oncologist and a kidney doctor. At stage 3a I find the visits to the kidney doctor a waste of time. All she does is run the same exact blood tests and urine tests the my primary care does. Her advice is typical of keep hydrated, avoid EXCESS protein and salt intake. All thinks my primary care advises and that anyone with common sense knows. I do NOT blame her. What else is there for her to do. There is no magic wand nor recipe nor anything that she can offer beyond diet advice and monitoring my blood/urine.Now you list a lot of problems. Such as high cholesterol. You did not say what was high. Overall cholesterol, or HDL, or LDL or Triglycerides. high HDL is a good thing for example. This is NOT likely due to your CKD but more your lifestyle (diet, lack of exercise). It should be addressed but by your PCP, NOT your kidney doctor.
Anemia. This can be kidney related as you also report fluid buildup. Also the leg cramps are tied to fluid retention. While not a typical 3a symptom, it can easily be kidney related. IF related to your CKD it is due to the kidney not flushing out toxins (waste) and fluids enough.
BUT always remember, just because you have some level of CKD (3a is MODERATE disease), other medical problems can be totally unrelated.
You need to concentrate your care through one doctor. One who knows all aspects of your health, not just specializing in one area. Sure, see these specialists if you wish, but you are already finding that most visits to them don't accomplish much at this stage.
Summarize your questions on a piece of paper and visit your PCP. Ask him:
--Tell him of your anemia, fluid retention, leg cramps, and what should we do??
--Ask him about your cholesterol levels (remember to have high cholesterol is not uncommon but you don't report how high nor if HDL, LDL, etc as the treatments for each are different).
Do not look for some magic medication nor remedies for CKD. Your PCP has all your blood work, all categories. If he finds the cholesterol is unrelated to CKD there are medications, but diet improvement is the best. For Anemia again the cause is important. Or perhaps you were just off this one time and it will be back to normal next test. Fluid retention there are pills (diuretics). This could solve your retention, cramps, and even help with the anemia.
Thanks Rick. That explains it very well. I was literally pulling my hair out in frustration. I really thought someone would just take control and tell me everything to do. Now I realize I have to take control of my own treatment. I will make an appointment with my PCP and address all my concerns with him.
Welcome to our community. Here you will find wonderful, compassionate and knowledgeable people who will be happy to support you as you go through this journey.
Bear in mind that although there is no cure for kidney disease, with diet, medication and exercise the goal will be to stabilize it and prevent progression. It is a process.
Hopefully you will soon have the results of your biopsy and the condition identified will be treated .
Your nephrologist sounds disappointing as he/ she is not meeting your needs. Have you considered a second opinion?
It is important that your doctor listens to your concerns, explains your labs etc. in simple language, answers your questions and is willing to consult/ communicate with the other members of your health care team; be it call, email or fax so that everyone is on the same page.
You have been given great advice to bring in copies of lab results if your doctors are not affiliated with the same group as the results and ranges may vary. I do that myself as my GP and nephrologist are not with the same group.
Look at your labs and check off any result that flags high or low next to the ranges provided by the lab and ask your doctors about them.
Edema, high blood pressure, anemia, elevated cholesterol are often associated with kidney issues, but not every patient has every associated condition.
As far as the statin, I would see the ordering doctor and discuss the side effects that you are having.
Perhaps another statin may be better for you. We are all different and what works for one, may not be suitable for another.
If this is your GP, great idea as he/ she can take a closer look at the whole picture and advise you and possibly refer you to a second nephrology opinion if you decide to do that.
Unfortunately, we have to be our own advocates.
As far as the diet, kidney patients eat low sodium. ( 1500- 2000mg daily) no red meats, no processed foods such as canned soups, cold cuts and cured meats.
Protein is also low amounts.
Keep an eye on your phosphorous; dairy and potassium as well. Potassium is in many breads and higher in some foods.
Fresh fruits and fresh or fresh frozen vegetables are great. Roast, grill, steam.
Water is excellent. Avoid dark colas, NASID pain relievers as Advil. Add in a walk every few days.
Once you get your biopsy results, your doctor should be willing to refer you to a renal dietician who will recommend foods and quantities based on your labs and diagnosis.
Below are a few links to get you started. It's really not a diet, but a lifestyle change.
Please reach back and let us know how you are doing and what your biopsy revealed.
Hi Bet. Thank you for all the great advice. As you said I thought that as a specialist my nephrologist would take the time to explain and advise and not just put it back on my primary care doctor who doesn’t know nearly as much as him. I definitely need someone to hold my hand throughout this and act as a human to human not just doctor to patient. I might have to look for a nephrologist that is more human. I’ll keep you all updated. Thanks for all the advice.
I can understand your feelings which are perfectly normal.
I remember when I was biopsied and waiting on tenterhooks to find out the diagnosis.
My nephrologist at the time, was thorough in the tests that she requested to identify my kidney issue, but looked at my food selections and nodded good and responded to " eat heart healthy".
I took my own initiative to meet with the dietician who handled renal cases in that hospital.
I was not pleased with the follow up etc. from this nephrologist and her attitude and politely found someone else.
Doctors are paid very well to treat patients and set up and action plan. If this particular nephrologist is not meeting your needs, consider another opinion.
It is not about having your hand held, it's taking the time to explain a condition to a patient, discussing the treatment action plan with them and why in terms that they can understand.
If the statin was prescribed by your GP, ask; perhaps he/ she will be able to refer you to a good nephrologist who is willing to communicate with and work with him.
My GP helped me find my present nephrologist. Visit summary notes and labs are faxed as soon as I leave the office on both ends.
You are advocating for yourself. It's an adventure..but well worth it for peace of mind.
You are new at this, of course you would want professional direction.
You are among friends here. Please reach out again and note what the dx was and the plan.
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