First follow up test.

[captainlsu]

Just got my first lab results back after being diagnosed with ckd. My first gfr was 62 but was told i'am stage 3. Maybe because i'am diabetic with heart disease. Just thought any thing above 60 was stage 2. Anyway doctor said he wants me to get blood work every month now. Ive been pretty strict this month on my diet. Cut out salt and made alot of dishes from Devita's website. Gfr came back today at 57. Got hit for a 5 point drop. Can anybody tell me if that's normal? At this rate, my gfr will be at 27 in six months. Thanks in advance for any insight.

[Julesboz]

Hi there, I'm not an expert and I don't know the reason for your CKD but I want to reassure you that GFR naturally fluctuates. Just because it's gone down once it doesn't necessarily mean it will keep going down. Over the years mine has been 60, 55, 59, 49, 67, 53, 59 and now 60. In large parts of the U.K. At the moment we are having a heatwave and dehydration can affect your GFR. All sorts of things can affect it. I would recommend taking your doctors' advice, keep going with a kidney friendly diet, cut back on alcohol, don't smoke and take up exercise if you don't already. And don't worry, this condition can be managed! Good luck!

[lowraind in reply to Julesboz]

And drink water!

[captainlsu in reply to lowraind]

lol. I've been trying. but i have so many meds that causes dry mouth. i'll drink water. then drink diet cranberry juice. never any thing fizzy. before i got diagnosed, was drinking tea with stivia.

[lowraind in reply to captainlsu]

You can also make your own lemon water.

[motolas in reply to captainlsu]

I would not reccomend diet products which contain chemicals you dont want to have your kidneys deal with,

[Margie5967 in reply to Julesboz]

Would you mind sharing how long you have been at this level?

[Julesboz in reply to Margie5967]

Hi Margie5967, my last blood test was in October 2017 where my GFR was 60. The first record I have of my GFR dates back to 2008, where it was 60. And as you can see above in between those times it's gone down to 49 and up to 67 so, although my doctors only told me last year that I have CKD, I've actually had it for 10 years.

[Margie5967 in reply to Julesboz]

Thank you.

That’s encouraging.

Would you mind sharing what you have done to help raise your GFR.

[Julesboz in reply to Margie5967]

Yes of course! The doctors don't know the cause of my CKD - I don't have high blood pressure, diabetes, a family history or any of the other risk factors and I'm only 53 and in good general health. I've however worked out that there's a direct relationship between food and my GFR, especially dairy. If I eat dairy my GFR goes down, and if I abstain it goes up. I've been intolerant to alcohol, soya and lactose for years, but last year I removed dairy and gluten from my diet too (it's not just kidney issues, I have all sorts of intolerance symptoms). As well as this, I don't drink fizzy drinks, I avoid processed food as much as possible, cooking everything from scratch, I eat lots of veg, I don't smoke, I exercise and try to keep well hydrated. I also avoid any prescription and over the counter medication unless absolutely necessary. I think I may have just taken a few paracetamol and nothing else over the last year. The only thing I do that isn't recommended with CKD is eat quite a lot of red meat, because I have a problem retaining iron and vitamin B12. I'm due my next blood test in sept/oct and am hoping that all of these measures will have ensured that my GFR has remained the same or even improved.

[rabbit01 in reply to Julesboz]

Same as me. 51 and aside from CKD in good health. I also have an iron and B12 problem but they can give you injections for that rather than having to eat red meat. Well done for keeping the level up.

[Julesboz in reply to rabbit01]

Hi rabbit01, yes I take B12 sublinguals and liquid iron supplements too. I must admit to being a red meat fan too so that's also a reason for eating it. Due to food intolerances I've had to give up so many things and I'm hoping to keep on with eating red meat a bit longer. I'm waiting for my next bloods to see if I need to reduce intake, but I'm crossing my fingers I don't! It's my vice of choice

[rabbit01 in reply to Julesboz]

Haha, I know what you mean. I used to love a steak. I have recently gone dairy and gluten free so if my eGFR picks up as a result I would treat myself to a sirloin!

[Margie5967 in reply to Julesboz]

So no alcoholic at all?

[Julesboz in reply to Margie5967]

Hi Margie5967, no I have not had any alcohol for about 6 years because I'm very intolerant to it. Even a few sips of wine makes me feel terrible! Palpitations, chest pains, shaking, headaches, fatigue, nausea. I miss a nice cold cider in the summer, but it's just not worth it unfortunately.

[Margie5967 in reply to Julesboz]

Ok, I am so sorry to hear that.

I thought it might have been affecting your GFR.

Thank you for all the information, it’s been helpful.

[Julesboz in reply to Margie5967]

It's a good idea to limit alcohol if you have CKD anyway.

[Margie5967 in reply to Julesboz]

I totally agree. I have been doing just that!

[captainlsu in reply to Julesboz]

I hear ya jules. When I was a kid, i could drink a gallon of milk a day. now i'm lactose intolerant. I try to eat a bowl of corn flakes every other day with lactose free milk. Davita said corn flakes are ok to eat. trying to stay away from anything with oates because of the phosphates in them. but having extreme bowel problems right now. don't know if that's from the kidneys or what. just seems like lately my whole body is going out of whack. Did make some killer steamed fish last night that everybody loved.

[orangecity41]

I think too that the level the Doctor diagnoses you at are other factors taken into consideration. I was diagnosed at 3b while the GFR test showed number for 3a.

Agree with Julesboz, just keep on your diet and follow your Doctor's plan; and eGFR fluctuate s in my case also.

[captainlsu in reply to orangecity41]

thanks for the response. I have about three or four meds that are bad for kidneys. one is omerpazole. he told me to stop taking that. the others are beta blockers and choloesterole meds. he said i have to take those. said i will have a heart attack if i dont. kinda of a catch 22 thing. insurance wont pay for different meds. I had quit taking them 10 months ago because of side effects but my labs came back with my tri numbers at 440. and already have heart damage and some artery blockage. so it is what it is. can only control my diet and do what I can. but my blood sugar has been so much better on diet and since i quit metformin. been staying under 200. so there is always a bright side. still cant lose weight lol. but family members are shedding pounds like crazy and love the food i cook from devita. have i dont know how many meds i take that has side effects of weight gain. I dont gain weight but dont lose any. I dont drink alcohol. excersise when arthritis is not to bad. Used to be a serious athlete when i was younger, but it has taken its toll on my body when i got older. thank you for all the comments and advice.

[lowraind in reply to captainlsu]

What meds do you take for arthritis?

[captainlsu in reply to lowraind]

nothing. I'am on medicaid. cant take nsaid's like alieve or advil since they will damage the kidney. Tylenol doesn't work at all for the pain. a couple of years ago, i was taking a lot of ibuprofen every day for the pain. wasn't aware at the time how bad they could be for the kidneys. Pretty sure that is what lead up to this. Plus the diabetes. I had knee reconstruction at 15 from a bad football injury. they put a lot of metal in my knee. then did 20 years of martial arts on top of that. started having arthritis pains in my early 20's. But my family has a history of it. just got use to it. would take bc powder till that didnt work. then alieve. then whatever would work. Use to work long hours. But over the years, just got worse. When i would go to the doctor years ago, they would tell me my liver and kidney numbers were a little off. but i was young and didnt pay attention to things like that. would just blow it off. I was trying to raise a family and my focus was on them and not my health. So I'am at this point now. I should have paid more attention but back then it was family first and my family is very important to me.

[orangecity41 in reply to captainlsu]

Agree captainLSU that one has to make decisions based on possible outcomes. I was prescribed zetamibe a non statin med. I also must take prescription omeprazole to avoid a more serious condition. Many factors weigh in. Sounds like you are doing the best you can.

[captainlsu in reply to orangecity41]

oh yeah. I have a great support group from my family thank god. one of the meds i have to take is simvastatin. the other is carvedilol. and topomax and another nerve blocker. what is a blessing is support groups like this one and other sites to get great feed back. the nurses at the doctor office told me not to pay attention to any thing on the internet. when i first was told i had ckd i didnt know anything about it. one nurse told me to drink only water, no salt and no nsaids and i would be ok in a couple of months lol. In my opion, that is pretty dangerous for somebody in the healthcare industry that is not a DR. to tell somebody.

[motolas in reply to captainlsu]

I you drink carbonated beverages you may get heartburn. Such are acidic, particularly diet colas which are the most acidic. If this is the reason you are taaking omeprazole, I suggest non carbonated beverages.Water is best! Ihad such a problem and when I stopped carbonated water, I stopped omeprazole without heatburn

[captainlsu in reply to motolas]

Have not had a carbonated beverage in months. Use to treat my self to diet rootbeer from time to time. but in the past year i have been drinking tea with artificial sweetener and lemon juice. I was already on a diabetic diet before i found out i had ckd. if i did not eat healthy enough my blood sugar would shoot through the roof. Just a little bit of bad food would make it climb. and when i say bad food, I'am talking about a bananna or a lot of grapes. would always know because i would get these severe headaches. Now that I have ckd, I have to change my diet again to half of what I'am eating and still my gfr is dropping. I can live with it. but my daughter found out, and to say she is very concerned is a understatement. I told her that i could be at stage 3 for years which is true. but i'm not going to tell her about the latest test or any more test. she does'nt handle news very well. I'm just trying to find all the facts I can to see what i'm dealing with. I like my doctor but get the feeling his hands are tied with the current state of insurance now days.

[rabbit01]

It is always going to fluctuate so don't read just a couple of tests and extrapolate that forward. It does not work like that. The e in eGFR stands for "estimated" so it is going to vary a bit from test to test. Just stick to the diet and do some exercise if not doing so already and keep hydrated with good quality bottled water not the stuff that comes out of the taps full of chlorine. Be thankful that they found your problems when you still had time to make changes and keep it stable. I was at 17% when I was diagnosed and have been fighting to stay off dialysis for over three years. If I can do it then anyone can. Good luck.

[Prayers in reply to rabbit01]

Good job! You got this.

[Cruze44]

I hate to play devils advocate here, but a 5 point drop in eGFR in a short period of time is concerning. I’d make sure you get a baseline and go from there. I was told by a Cleveland Clinic doc I paid a nice little chunk of money to talk about my case that a eGFR drop of 3 points per year is reasonable. However. He said a drop of 5 or more in a year was indicative of progressive disease. I would definitely have this checked every month or so until you establish a baseline and go from there. Like the others said. It may have just been a temporary increase and not a legit increase. I read one study that concluded that eGFR estimates could vary by as much as 35% in a given day. But these would be “false” estimates and not truly accurate at all. I also read that eGFR above 60 are often extremely inaccurate. And usually the REAL GFR is much higher then quoted. This is why an eGFR over 60 is considered perfectly normal. Also the reason the vast majority of labs do not even list a eGFR if it’s above 60. It will usually just say NORMAL on the blood work.

[DRGPS51 in reply to Cruze44]

However, you can have a dramatic (& temporary) drop IF you start taking a new medication which stresses the kidneys. That was my situation. My eGFR dropped from >66 to 50 in 5 months because I was taking a newly FDA-approved blood thinner, Xarelto. All the "real world" side effects are unknown, but clinical trials are now reporting kidney problems. I've been switched to another med and my eGFR & creatine are steadily improving. Finding the underlying cause is an important piece to the puzzle.

[captainlsu]

On my first test my creatine level was 1.3. this time it was 1.4. but on both test my sodium and potassium were on the low side and my bun was actually lower this time at 19. but on both test my white blood cell count was high. last test it was at 11,500. which from what i found out on my own is i have an infection some where. when i asked my doctor about it being high, he said it was ok. on my first test wbc was 10,300. so that is a jump of 1200 on white blood count and 5 point loss on gfr. Does anybody think that is related?

[itzmich]

Don't worry it can and should go up. Make sure you are really drinking enough water, no salt, and low protein. I say no salt because it is already in so many things anyway. Of course exercise daily is also good especially for stress and worry. Hoping you'll have better results next time.