CKD - Unsure, advice needed please

[emma]

Hi,

I went to the doctors recently for an unconnected problem which resulted in blood tests being done. The results were a high (101) creatine level and egrf of 58. Also the urine sample showed lots of white & red blood cells and pus cells.

The doctor ordered more blood to be taken two weeks later, the results were an increase in creatine to 104 and a reduction in egfr to 56. But the urine sample came back clear.

He has told me I may have CKD and I have been referred to a nephrologist. Howver the appointment isnt until the middle of October.

I am confused, surely if I were ill I would feel it. I have no health issues, low blood presure and I exercise lots. However on the other hand (not sure if these are connected) I do have to get up to use the loo in the night which I never had to do and I keep having terrible headaches.

Could the blood work be incorrect and my results just a one-off, or is this real and I may have CKD?

Thanks
Emma

[Beth Witten MSW ACSW]

One of the problems with kidney disease is that until someone's kidney function drops below 50%, they often have no symptoms. Some people don't have recognizable symptoms of kidney disease until later than that. Some of the symptoms of kidney disease include urinating more at night, swelling in the feet, hands, and sometimes in the face, blood in the urine, foamy urine (protein), fatigue, nausea, vomiting, poor appetite, sleeping more than usual, memory problems. Some people have gone to the emergency room with flu-like symptoms only to learn that their kidneys have failed. Learning that you have kidney damage now means you can learn what you need to do what to do to protect your kidneys.

If your eGFR is 56, this means that you have about 56% of normal kidney function. The nephrologist will probably re-test your blood to see whether your kidney function is stable. Your nephrologist will review your health history, your family history, the medications you're taking, etc. and suggest medicines, diet, and lifestyle changes that may be protective of your kidneys.

If I were you, I'd call the nephrologist's office and ask for an earlier appointment. If one is not available and your time is flexible, you could ask to be notified if there is a cancellation so you can take that person's place. This might get you in to see the doctor sooner so you can learn what you need to l learn to stay as healthy as possible.

On the home page of this website, there is a link to a packet of materials on chronic kidney disease, including what the labs mean. They are written for US patients so the values for creatinine are different. There is also information on kidney disease and treatment options plus much more on the Kidney School website at http://www.kidneyschool.org.

[emma]

Hi Beth,

Thanks for your reply.

I am still convinced that I am going to see the nephrologist and be told that I'm ok and that it was an error with the blood work .

I did see my doctor today and he showed me the referral letter he's written, it mentioned my raised creatin levels, low eGFR, and slightly high potassium level. So I guess it sounds like CKD may be a possibility for me.

Have you any ideas what this means, do I have to make major changes. I not on any medication, apart from this I am very rarely ill, I have low blood pressure (100/60). I also follow the Slimming World healthy eating plan (lost 7 stone) and do vigerous exercise a minimum of 4 times a week. I cant see what else I can do.

Presumably at the first appointment the consultant will just chat to me, or do they do scans too??

Sorry for all the questions

Emma

[Beth Witten MSW ACSW]

It is very common for people who have been recently told that they have a health problem to hope that the diagnosis isn't true. Even if it is, you can still do well if you learn as much as you can, ask questions, and take an active role in your care and decisions about your care. There are many people with decreased kidney function who live full lives in spite of it.

If you are overweight, it's a good thing to lose weight by eating less and and exercising more. If the diet that you're eating is a high protein, low cab diet, your doctor may suggest that you reduce the amount of protein that you eat. High protein diets can cause kidneys to have to work harder.

You say you're not taking any medications. If you're taking any dietary supplements like over-the-count herbal supplements or if you're taking any non-steroidal anti-inflammatory drugs for pain these may be contributing to your kidney problems. Be sure to tell your doctor every medicine or supplement that you're taking so he/she can let you know if it's safe to continue taking. If a medicine or supplement is part of the problem, stopping it can help prevent further kidney damage.

If your potassium is slightly elevated, be careful about high potassium foods. High potassium can cause muscle weakness and can even cause heartbeat irregularities and heart attack. If your doctor didn't give you a list of high potassium foods, look at this website for the nutrient you want to look at by alphabetic list of the food item or by nutrient content:
http://www.ars.usda.gov/Services/docs.htm?docid=9673

If your kidney function is about 58%, the your nephrologist's goal now is to do whatever he/she can to protect your kidneys. As a partner in care, you will want to ask what you can do to protect your kidneys. This may include some lifestyle changes. For instance, if you smoke, your doctor will probably suggest that you stop. Smoking can cause kidney damage.

You may want to read the Life Options Patient Interest Checklist for people that have kidney damage but do not have kidney failure to get an idea of some questions that we thought patients might want to know. You can also read the information we posted about chronic kidney disease. You can find these from the home page of this website. Look for fact sheets under Free Materials for the checklist and under More Reading for the CKD information.

[emma]

Hi Beth,

I am so annoyed. :x

I phoned my local hospital today asking them to confirm my consultant appointment, however I was told the date has been rejected. Apparently the consultant read my notes and decided he needs more information, so instead of telling my doctor this and getting the information in time for Oct 18 he has rejected the date and I will have to re-book an appointment when he gets it.

This is the second time my appointment has been rejected, I am started to get annoyed. I have been told that its likely I will not get an appointment until November now, my original appointment was for the end of August.

Sorry to moan but I am so fustrated, its almost as if they dont want to see me.

Emma

[Beth Witten MSW ACSW]

I can understand your frustration. I'm not sure what else the nephrologist needs to evaluate you besides your lab tests, but you might want to call the hospital back and ask to speak to the nephrologist's nurse. Ask what was missing in the referral they received and talk with your doctor to make sure that he/she provides that information. I would follow up with the nephrologist's office to see that they received the information needed and offer to accept an appointment when someone cancels if your schedule is flexible. If you have kidney disease, the sooner you know it and learn what to do the better you'll feel and the better you can protect your kidney.

Consumers of healthcare have choices, just like other consumers. If you don't feel comfortable with the doctor's staff or with his cancelling the appointment without notifying you or your doctor, ask your insurance company about other nephrologists in their network. You can also look up doctors by specialty and location on the American Medical Association website under their doctor finder database. You can click on the doctor's name and read their location, contact number and whether they're board certified.

http://webapps.ama-assn.org/doctorfinder/home.html

[emma]

Hi Beth,

I hope you are well and had a good christmas.

I finally had my kidney ultrasound today. I was told I have two kidneys of equal size (12 cm) and depth but they are showing up as bright on the ultrasound. The doctor said they were as bright as my liver whereas they should have been much darker.

Any idea what this means?

The dr said that he would file his report over the next 10 days and that I would have to wait until then. In the meantime I have also had several blood tests (each showing high createnine and a low egfr of 55%). I have also had to do a 24hr urine sample and from this they were going to do a createnine clearance test, but nobody seems willing to tell me of the results.

Sorry for all the questions, but I hope you can help.

Many Thanks
Emma

[Beth Witten MSW ACSW]

Hi Emma,

Thanks for the well wishes. I hope that you were able to enjoy the holidays in spite of having to see doctors and have medical tests. Speaking of seeing doctors, do you have a nephrologist now?

In my opinion, it would have been nice if the doctor would have told you more than you'll get my report in 10 days. I'm sure you'll be waiting on pins and needles until then. So far as your kidneys appearing bright in an ultrasound, I found an article that describes what the structures of the kidneys look like with ultrasound, MRI, and nuclear medicine testing. The article includes what normal kidneys look like and what kidneys look like if there are stones, cysts, and different diseases. You can search the page for "bright." Be sure you're reading about renal ultrasound. When I do a "print preview" on my computer this section starts on page 3.
http://www.emedicine.com/med/topic3373.htm

So far as not being able to get your creatinine clearance results, one way to be sure you know the results of your lab tests is to ask the doctor and/or office personnel to send you a copy every time you have lab tests done. I'd call and ask for this now. Different labs "flag" abnormal results different ways. They usually include "normals" on the test results so you can tall if your results are normal or out of range too high or low. This way you can ask your doctor questions about what the results mean and what you can do if the results are out of range, plus you can track your lab test results over time. Some people even make charts of their lab test results on paper or using programs like Excel on the computer.

With your test results you can also search the Internet for what the test results mean. A couple of helpful websites include:
-- http://www.labtestsonline.org
-- lab module of Kidney School at http://www.kidneyschool.org

[emma]

Hi Beth,

Thanks for your reply.

I have finally seen a nephrologist (October) and he thought that I dont have CKD but he is going to do the tests just as a precaution. I am not sure how he will view the ultrasound results though, I suppose all will be reveiled in 10 days time, that is assuming I get told what is going on. I am guessing that if I havnt heard anything in 3 weeks time then it is not too serious and it will wait until I have to see him next at the end of March.

Thanks for the links, I had a look at the first one you mentioned. Throughout it mentions high blood pressure, mine isnt neither has it ever been high, its 100/60 so if anything its low. I was also told that my kidneys were of normal size (12cm) so Im still not sure what is going on. Surely if something was wrong then they would be smaller and my blood pressure would be high?

Thanks
Emma

[Beth Witten MSW ACSW]

Thanks for the update. As I recall, in your first post, you said your lab test results showed you had an eGFR of 58. I don't know if this has been repeated, but that's one of the first things I'd want if I were in your shoes. If your eGFR is 30-59, this is Stage 3 chronic kidney disease. There are probably many people with Stage 3 CKD who don't know it and aren't seeing anyone about it. It's good that you're seeing a nephrologist and that you had the ultrasound testing. If you don't get a call about the results, I'd suggest calling the doctor's office to ask for the results so you can know what they are and make a list of questions to ask the nephrologist when you see him, including what else besides kidney disease could cause your eGFR to be reduced.