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  1. #1
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    confused about fluctuating GFR

    My husband was diagnosed with IgA 2 months ago. His initial GFR was 24. The nephro started him on some steroids. Two weeks later it was at 20. Two weeks after that it was 19. The doc stopped the steroids and two weeks later it was back up to 24. He waited 4 weeks to test again, and now it's 26.

    What is causing his levels to increase? I keep asking the doctor- and he keeps saying it doesn't matter, because he has a terminal case with severe scarring, so there is no chance that he'll regain any function. He also says it's "guaranteed" to continue to decrease and that he's expecting him to be on dialysis by the end of the year.

    But it's going up...so doesn't that mean it could keep getting better? Is it normal for it to fluctuate so randomly?

    How fast does GFR usually decline?

    I'm not sure if it matters- but he's 27 and has proteinuria, hypertension and hyperlipidemia. He's only on meds for the blood pressure/cholesterol now.

  2. #2
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    Re: confused about fluctuating GFR

    Creatinine comes from muscle. A little girl has normal kidney function and a creatinine level less than 60. The body-builder has normal kidney function and a creatinine of 120. For the girl, a creatinine of 120 would be very poor kidney function.
    Because of the problem of differing amounts of muscle in different people, most labs now also report an estimated GFR (eGFR) with creatinine measurements, and this can be very useful.
    Big changes in creatinine are likely to be important, whatever the creatinine level. Although different labs may give significantly different results for the same creatinine sample, because there are different ways of doing the test.
    Normal blood creatinine is 60-120 micromol/litre (0.7-1.4mg/dl) - particularly to small, disabled, or elderly people. In many people, 'normal' creatinine can sometimes conceal 50% loss of kidney function.
    Urea - Urea is a small molecule that is produced in the liver from protein that you have eaten. It is normally put out by the kidneys, so blood levels rise as kidneys fail. However other things change the level of urea in your blood too, so that it is not a simple guide to kidney function. Here are some of the things:
    Fluid - if you are short of fluid (e.g. drinking very little), your kidneys keep more urea in the blood
    How much protein you have eaten
    Liver disease can stop urea being produced normally
    Urea is still a very useful test when used together with creatinine. It can also be used to measure how well dialysis is working to clear waste products (see Is my dialysis good enough?).
    Normal blood urea is 3.5-6.5 mmol/litre (20-30mg/dl)


    As you can see what you eat and drink and how much you excersise and even your race sex age and weight can make the results flactuate... You cannot judge the disease on one test result but on a trend.
    Ensure that his diet and the time of the test is more or less the same as the previous one... and not after too much excercise.

    To get an even more accurate result for the kidney function you have to do it in combination with a 24 urine test.

    Hope this helps.
    Please note: Any advice given is given from my own experience and not medical advice.

  3. #3
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    Re: confused about fluctuating GFR

    Hi drit,

    I've been tested twice in the last few months and my GFR was different on each. When I took my creatinine level on the last test and put it in the Davita GFR calculator it was even lower then the other two GFR numbers. It's a bit confusing...but Des explained it very well. The amount of proteinuria is another important factor in how well the kidneys are working. Do you have those numbers?

    Is the Nephrologist educating you ( he sounds so negative). Is your husband on a low protein diet? As your husband's GFR goes down he will need to be monitored closely. Is his Neph monitoring his potasstium and salt intake as well as many other important things. Does he have anemia?

    You both should educate yourselves about Kidney Disease and learn as much as possible. Being proactive will bode well for better outcomes.

    Not to scare you but at some point in the future you also need to research the possiblilities of your husband having a transplant. It could be a possible option besides dialysis.

    However, there are certainly many who have gone a number of years at your husbands lower GFR level. To do that they have taken control of their diet and excercise and been watched and given all the appropriate meds by their Doctor.

    Do you have copies of your husbands lab results?
    Diane ~ Sonoma County California

  4. #4
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    Re: confused about fluctuating GFR

    We had read "Coping with Kidney Disease: A 12-Step Treatment Program to Help You Avoid Dialysis", and been following the suggested diet- but during that time the side effects seemed to get increasingly worse. This was the same time period he was on several types of steroids. In a two week period, his creatnine went from 3.5 to 4.6. During this time had also had a hard time controlling his sodium and potassium levels.

    After coming off the meds and going back to eating normally - the side effects subsided and his sodium/potassium levels came down within a normal range. I guess this is what I find the most confusing.

    I'm glad for the responses, and I know everyone is different- but seeing as how the nephro deals with hundreds of patients, I was hoping he could give me more detailed answers.
    Mostly he just seems overextended by his patient load with very little patience for patients who watch too much House. He definitely has the "doctor knows best, so just dont worry about it" attitude. While understandable, it's still frustrating.

    My husband has already been referred to a transplant center for evaluation. It's unlikely he'll be able to find a living volunteer as his blood type is O. No one we know is a match- and the swapping programs wont do him much good- as anyone who'd match him (another 0 ) would already be a match to their own loved one.

    He is still anemic, but seems to be improving now that he's off the low protein diet.

  5. #5
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    Re: confused about fluctuating GFR

    Oh Drit,

    I just had my first visit with a Nephrologist. He seemed so distracted and even brought in someone elses file when he first came in. The rest of the '10' minutes he gave me were rather strange. There is even some dispute as to whether I have CKD so I am following through ( for the time being with my regular Doc). But, my heart rather sunk as I realized that communication with him in general was not going to be that great. Overworked...and overbooked and a rather dismissive attitude.

    I had an earlier bout with a serious illness about 5 1/2 years ago and I encountered something similiar and it certainly made my situation so much more difficult and emotional. I am someone who needs to understand all my options and the nature of my illness so I can make informed decisions.

    Is it possible to see another Nephrologist....even to get a second opinion. I hope you can find someone who will answer your questions and provide you with plenty of information. This is all hard enough without feeling that you cannot rely on someone who can guide you and provide some answers.

    This is one of the reasons I decided to become more medically savvy and proactive in my own health care. I seriously think you can fall through the cracks ( the abyss) of the health care system.

    Wish I had more to offer you in terms of advice. Hopefully, someone else will come along who's Kidney function is closer to where your husbands is now and they can offer something more concrete about your present situation.

    Sending comforting thoughts your way,
    Diane ~ Sonoma County California

  6. #6
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    Re: confused about fluctuating GFR

    This specialist and his brother practice together. They travel often and serve the outlying areas around our city. They are the only nephro's within several hours of us.

    "Overworked...and overbooked and a rather dismissive attitude. " Perfectly describes all our visits (every other week for the last 2 months). The doctor wouldn't even comment on the diet advice in the book I'd read- and I had to argue for several minutes before he gave me the card to the dietitian he kept on staff for the patients on dialysis (so I could ask her my questions).
    I also had to remind him repeatedly to submit the transplant referral- although he'd mentioned he'd do it on our first appointment- it took nearly 6 weeks for him to send his receptionist the memo. arrrgggh!

    I guess I'm just venting- but it doesnt seem to be isolated to just my experience. My husband is also filing a claim with the Veterans Administration (blood tests from his active duty years showed rising creatnine & what not...) so he's been traveling to see their specialists as well (that takes care of the 2nd opinion, I guess?). The more I talk to other CKD patients and their families- the more irritated I get.

    It really seems as if no one (even the doctor) cares until after you've hit the point of needing dialysis. There isnt too much focus on preventive care- only maintenance once you've hit the point of no return.

    Well- thanks for reading and replying. Good to know my questions arent just going out into a void.

  7. #7
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    Re: confused about fluctuating GFR

    Yep,

    You seem to be to healthy for the doc to bother.... I get that often.

    My neph told me that I can eat what I want because nothing is going to stop the path of my disease........

    I understand why... now.... enjoy life while you still can because when you start on dialysis ITS HELL to follow the diet.

    D
    Please note: Any advice given is given from my own experience and not medical advice.

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