Hi All, I’m new here so please be patient with me😊. I keep reading on my records from the GP,Kidney disease (CKD). But any time I bring it up I’m told no there’s no problem with your kidneys. Well I take a lot of medication so it tends to worry me. Anyway can anyone explain to me what this means.
Right kidney small 8.6cm& scaring. Left Kidney 11.1cm mild cortical thinning.
I have no idea what that means,but it does worry me,I’m not being told. If everything was ok, why put these words in my records??
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Breathless1943
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We would have no idea why it says that on your record. Do you have a lab record. Check the GFR. That would indicate if you do have a weakened kidney.
More important is you need to make your doctor explain why this is indicated. If they are not forthcoming, then you may need to see a new doctor. Any clinician/provider who holds back information from the patient is not worth working with. Its your body and your health. You have every right for a clear and understandable explanation.
Have you had a renal panel run recently? If so, what does that data say?
Creatinine
Potassium
Phosphorous
eGFR
BuN
Also, you do need to have your PCP explain, in detail, to you exactly what your data means. This really isn't an option. If my doctors won't explain my data to me as well as what it means for both the immediate and extended future, they don't get to be on my medical team I can't take care of myself appropriately at home on a daily basis if I don't understand this information. I also often say that even if it's bad news I need to know AND I will actually be less anxious knowing what's going on . . . So, no matter what they nave to tell me, I want to know the information. I actually told my first nephrologist that I was ready to hear whatever he needed to tell me
Thank you,I find all this information confusing,but I try to understand,and when I see (CKD) I know exactly what what that represents,but that’s about it. I am a person who likes to try and help myself when it comes to my health,but if you have doctors that don’t explain,your basically stuffed.
I can’t get my head around,things like “ We need to do your bloods again in two weeks” if you inquire why, “Oh no problem,we just want to double check”
I have Rheumatoid Arthritis (quite under control) when I see my Rheumatologist he likes me to take a water sample always. Last November I seen him,he reported to my GP I had an infection,( first for me) my GP got in touch with me in February,and that’s no lie. I have multiple health problems,I’m not complaining if they were just honest with me,so I can do what’s necessary for myself. Sorry to rant just got a bit carried away.
Can you look your renal panels up online? The lab that processes my bloodwork has a portal where I can check my data. Plus my doctors’ offices have patient portals where they post my labs; although, it can take some time before my doctors’ portals actually post my labs. So I check mine through my lab’s portal.
Once you get your labs and look at results over the past year, you’ll have a much better idea how your kidneys are doing. My nephrologist typically says that my data will bounce around some. The creatinine is the number in my labs that he zeros in on as well as my electrolytes: potassium, Phosphorous, etc.
With my labs I can see whether my data is in the normal range, elevated or running low. I’d suspect that your lab report provides the same data.
Along other lines, I just changed doctors for both primary care and renal care this past May. I made this change specifically because both doctors were not giving me information regarding what they planned to do for my care when it’s time for me to start dialysis. When I pressed for information they either gave me none or gave me little information that wasn’t consistent over appointments.
I’m thrilled with my new nephrologist. My new PCP is also good. So I’d encourage you to vote with your feet and shift to a new physician. I selected my new physicians but had to wait close to 3 months for the first appointments. I’m in renal failure but not yet on dialysis. Consequently I stayed on my old doctors’ case load until I had gotten to my new doctors for the first appointment. After that appointment I cancelled my upcoming appointments with my old doctors.
I suspect we’ve each encountered doctors who are not effective. Frankly some are worse than effective. I view it as my job to advocate for myself and vote with my feet to get to effective doctors. Of course I also need to work with them...
Perhaps this website, labtestsonline.org will help you understand what the individual labs are looking for and give you more information to allow you to ask specific questions of your physicians.
He's telling you not to worry because sometimes lab results can be off for a number of reasons. Since you have multiple issues he probably knows that telling you that there might be an issue will just cause stress so he wants to wait two weeks and do them again to see if there is a concern.
In the meantime, you can take action to doing things that will help your general health especially since you have an autoimmune disease. If you are not already doing so, change your diet to a more whole food diet where you cook and don't use a lot of prepared or fast foods which are loaded with salts, sugars and stuff that inflames autoimmune. Stop drinking sodas as they are loaded with sugar and chemicals. Stop smoking if you do. Walk or some sort of low impact exercise. Eliminate sugars except small doses of maple syrup which has some anti-inflammatory benefits as does ginger, tumeric, and garlic. Gluten and nightshades also have been known to cause inflammation for autoimmune diseases so you might experiment with eliminating those as it could help your RA as well even though you say you have it under control. Cut back or eliminate red meat. That can help inflammation as well as CKD if you did happen to have it.
IF for some reason you do have CKD, you are in early stages, so many of the things mentioned can only help you and many of us on here have followed this lifestyle.
I hope not to sound to harsh here,BUT,I don’t smoke,I cook all my own meals,I have red meat twice a week,I never drink fizzy drinks,I drink water all day with a lemon cube in,and ginger,I make my own lemon cubes with fresh lemons,and ginger root. I have cereal every morning with almond milk,and I have sourdough bread because I’m intolerant to yeast. So all in all,I don’t think my diet is bad at all.
As you will read in my post SLIGHTLY Worried. It just annoys me when GPs don’t tell me about MY health.
I do believe I’m doing most of the right diet for almost all of my overall health,but my point being was.WHAT if I wasn’t,if I was told I could change where I needed to. 🤷🏻♀️
Sorry no offense intended. Excellent on your diet and awesome that you are taking control. Sorry, lots of people aren't as educated as you are so I just put that out there. I get your frustration. So many of us weren't told until later on. My GFR was 51 and my doctor didn't tell me at first either because he knew I had lots of issues and wanted to rule things out but. He did end up running more tests and I finally found out I had CKD 2 years later. So, you are so smart being proactive. Even then, no one told me about an anti inflammatory diet so I had to seek that information out as my CKD is autoimmune related. Good luck and keep us posted.
Sorry too if I sounded annoyed. I just get a bit upset with the most of the medical fraternity,the way they sometimes try to pull the wool over our eyes . I’ve dealt with to many doctors,consultants etc that all try telling me they know something when they don’t.
I’ve only ever had one doctor that told me “ I really don’t know what to do,but if I can help in any way I will” Now that’s rare in a doctor.
In addition to what others have said, I would advise that you educate yourself about ckd. Here are helpful rrsources:
• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.
• Renal Support Network provides many support and advocacy services including a phone support line.
• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.
• National Kidney Foundation provides a portal for patients too.
is well known for their recipes but they also have a forum for patients too.
Welcome! Our great members below have said it all. Thanks Jayhawker!
I will reinerate; if a doctor is not listening and communicating with you, perhaps it is time for a second opinion.
As Jayhawker said, we have to be our own best advocates. If you want to know why a lab is being repeated; ask. Doctors are paid very well to do their jobs and that does not mean do it because" I say so", you have the right to ask and refuse.
I would print out copies of your labs prior to your appointments from your patient portals and check off areas of question or flag as you can see where your results fall within the lab ranges ; bearing in mind that each lab may have their own criteria. In doing this, both you and your doctor are looking at the same page; ask for an explanation of any labs that are of concern. Your doctor should be forthcoming in explaining creatinine levels, GFR etc as they are partners in your health.
I ask my husband to join me at my nephrology appointments and scribe for me; using the notes for review after the appointment and my labs as a comparison prior to my next set of tests and appointment.
I also print out labs prior to my PCP appointment and note the last set of results next to the new ones.
I also bring a list of foods that I have been eating to the appointment as my doctors; both nephrologist and PCP have no guess work as to what I am eating to stay as healthy as possible and offer suggestions if they hear of a new product or have a suggestion.
Don't walk out of an office with confusion, labs will fluctuate and it can be overwhelming but it will all come together!
We are happy to have you here with us; don't hesitate to reach out and post.
Remember your Doctor works for you. If he won't explain things to you it's time for a new doctor. Be insistent keep asking. Have questions written down when you go see the doctor. Good luck I know dealing with the medical community can be difficult. Maybe bring a friend with you 4 ears are better than 2.
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