Possible ckd3a and scared

[sandymac8]

Hi, I am a 49 year old female who was told my gfr was 59 and my creatinine was 1.0, I have to see a kidney specialist on March 7th 2017. I have never been a big water drinker, so I for the last month I started drinking 64 ozs of water a day, I wont drink anything but water and started eating really healthy with lots of fruits and veggies, no more junk food. Stopped adding salt to food, went for blood work yesterday and no change in my gfr of 59 and my creatinine of 1.0. I am really worried about all this. This has hit me like a brink and I am really scared. Does anyone else have these issues they can share with me? Any help or advise would be greatly appreciated. Thank you!

[jaykay777]

Welcome, Sandymac. I was scared too, when my primary care doctor found during a routine test, that my readings were similar to yours. Although that doctor would have continued to monitor me, like you, I made an appointment with a kidney specialist. That was about a year and a half ago. My condition has remained stable. I also had a one-time consultation with a renal nutritionist who meets with patients at the kidney specialist's office. The others here will tell you about educational opportunities and nutrition advice from Davita. It's good you're drinking water, but you might want to ask how much is too much in one day. I am an 85 year old woman in fairly good health otherwise.

[sandymac8 in reply to jaykay777]

Thank you for your advice, I will look into Davita. I am just so overwhelmed and confused right now. I probably should wait and see what the kidney specialist says. I should probably of not looked all this stuff on the internet, get to many mixed answers. Have a great day.

[Spd2015]

Hi Sandy

Although you feel worried please dont. If your levels are stable this is a good thing. As advised already do check with the specialist about fluid intake, I'm on a litre a day (2.2 pints). I'm a bit more advanced and awaiting a transplant.

Take on board what the specialists say and please for your own sanity stop worrying my friend, you will be fine.

Big smiles from the UK, chin up as we say here 😀

Take care,

Simon

[sandymac8 in reply to Spd2015]

Thanks Simon, this has just come as a huge shock to me, I never had any health issue before and to hear this was pretty stunning. Thanks for your support, the waiting game is hard, since I don't see the kidney dr. for another 4weeks yet. I will let you know the outcome. Hope you have a great day.

[phillen]

you are already doing the best you can also remember you can stay stable for many years my husband as i always keep telling people was stage 3 for at least 15-16 years that we know of when he was that stage the consultant said you just don't know he may never get to the point of dialysis he was about 40 at the time 61 now & on dialysis 6 years but was due to a mixture of other things heart etc that bought on his fast decline in the end! so just eat a normal healthy diet drink plenty & generally look after yourself as a "normal" person should & try to stop worrying makes matters worse

see what the kidney consultant has to say if you need to follow a strict diet you will see a dietitian they will send you as it can be just as dangerous cutting down on things like phosphate & pottasium etc these things are carefully monitored as your other organs need the correct amount too to keep them healthy! x

[sandymac8 in reply to phillen]

Wow, thank you. That is very encouraging. I am just in shock right now, I have no health issues and to find this out was a tad overwhelming to say the least. Like I told Simon above, I will just wait and see what the kidney dr. has to say. Keeping my fingers crossed. Thank you so much for your reply. It is nice to hear other peoples input. Hope your husband is doing well. :O)

[phillen in reply to sandymac8]

He's fine but this is why i say eat a normal healthy diet as if you ever get to dialysis diet is so hard firstly he used to have problems with too much phosphates the past year its now high pottasium & phosphate ok its a strange illness had problems keeping protiens up as phosphates high in dairy we are vegetarians! i would add though things like smoothies are very high in pottassium so are not recommended for kidney patients or diabetics as they have increased sugar! x

[saifomar]

Your eGFR 59 is a good place to be if you are planning to hold on to that reading for the coming years. Cut off red meat, artificial sugar & diary products completely from your diet. If you are diabetic control your blood sugar levels and if your have hypertension (like me) then control your blood pressure. Reduce salt (sodium) but don't exclude it completely. Have raw berry smoothie's (two glass) on a daily basis without adding anything to it except for some filtered water.

[Ange17]

Hi Sandy,

I am a soon to be 45 year old female. I lost my right kidney do to misdiagnosed hydronephrosis January of 2015. At that time my left kidney was functioning at 72% blood check GFR.. but with that other test they do with injecting dye under X-ray it was 80%.. a year later I went in for a regular check up with my primary and routine blood work showed my gfr went down to 58% I freaked out literally.. they ran all sorts of test and I am A-ok.. so not sure why it dropped but for the last year it has remained steady.. it does fluctuate a little but I am told that is normal with gfr readings. I am seeing two nephrologists .. yes two!! After my misdiagnosed kidney problem I don't trust any doctor now.... having said that both have assured me I can live a long full life on this kidney if I take care of myself. Lots of water .. less then 50 mg of protein a day (plant based is better it's less stress on the kidneys) and in my case my kidney even though it is stable is holding on to my potassium intake so I have to watch my intake on that as well. I have extremely low blood pressure so most people will tell you low salt but I actually need it to keep from passing out and my blood pressure getting too low. My usual is 90/60. When they removed my kidney I developed posterior orthodontic tachycardia syndrome. So in the long run both nephrologist said this might actually help me keep my blood pressure down as I age. I still worry about my future but having said worrying now won't change the outcome in any way. So why ruin my life worrying about something that may never happen. Technology is also getting better every day .. who knows in the next 15-20 years our world could have its first artificial kidney on the horizon. Would sure help allot of people and get them off of dialysis. So try not to worry. Listen to your doctors and always get a second opinion. Good luck with everything!!

[sandymac8 in reply to Ange17]

Thank you so much for your input. Sorry you had to go through all that, what a horrible thing to have to happen to anyone. I have a hard time trusting anyone. When the nurse told me I had to see a kidney doctor, I totally lost it and starting crying, she told me not to worry, it wasn't like "OMG", she said I am boarderline. I had an ultra sound on my kidneys and that came back normal, so that is a positive I hope. I will wait and see what the doctor says on March 7th. Hope everything keeps going well for you. Take care

[mjaneven in reply to Ange17]

What was your actual diagnosis? My ultrasound shows a mild hydronephrosis but haven't been able to find the cause and I'm not sure I want to do a CT scan with dye as I've heard it is toxic to the kidneys .

[sandymac8]

I go to the kidney dr. on March 7 to see what my diagnosis is? I am going for possible stage 3a kidney disease. My ultrasound came back as "unremarkable ultrasound of the kidneys" meaning they did not find anything wrong. I guess I don't understand, my creatinine level is 1.0, which is in the normal range, buy my gfr was 59. I thought your gfr and creatinine level went hand in hand, when the gfr was low I thought your creatinine was high.

[klitten55]

I was just diagnosed last year with CKD Stage 3. My numbers were very similar to yours. I am a 61year old female. The nephrologist advised me to eat a low salt diet, keep my blood pressure under control and lose weight. She said it was caused from taking Ibuprofen prescription dosage (600-800) for about 30 years I have scoliosis and have had major back pain and still do. She recommended stopping the Ibuprofen. I don't need to see the nephrologist for 4 months. Good luck to you.

[sandymac8 in reply to klitten55]

I cannot figure out why my gfr is at 59! I don't take any medications on a daily basis with the exception of birth control pills, I dont have high blood pressure or diabetes, and all my other blood work came back normal. Had a ultra sound on my kidneys and came back just fine. Will wait and see what the specialist has to say in March.

[Crinkster]

Howdy Sandy,

A GFR of 59 is actually pretty good, especially when initially diagnosed. I didn't get to a nephrologist and renal dietician until I was in stage 4 (around GFR 24). I was grossly overweight. By following a pretty rigid meal plan (she prefers to call it that because it's not really a "diet" as it is usually thought of) I lost a total of 84 pounds (38 Kg). The KEY was that I lost 1 pound a week for the first 52 weeks, then very gradually lost the rest over the next couple of years. Despite it being a slow slog, I was encouraged to be patient and it paid off. In combination with each other, I have been stable in stage 3B (between 31-40) for the last 6-1/2 years.

There are other things besides creatinine to look fr in your blood work. Check for PTH, potassium, phosphorous and ferritin (don't want CKD anemia). Cutting out phosphorous, as best as you can, would go a really long way to keeping stable. The first thing to completely eliminate would be dark sodas. It's actually okay to drink things other than water (though water should still be included). My doctor has recommended about 3 L of fluid per day. (Don't forget there is fluid/water in fruits and veggies, too.)

Drinks: Fresh iced tea, hot tea (especially the green varieties), lemonade (read the label for phosphorous - fresh is best), coffee, and clear sodas like 7-up (lemon-lime), ginger ale, orange and some root beers are fine. I actually contacted Pepsico and Coca-Cola, by phone and email, to inquire about the phosphorous and potassium content of various root beers. "Mug" root beer has only 10 mg of potassium and zero phosphorous but others in their product lines were loaded. I have been instructed to limit phosphorous to 2000 mg per day (which is really pretty easy to do). In the U.S., manufacturers are not required to list the amount of this on their labels but look for anything beginning with phosp- in the ingredient label, i.e. any kind of "phosphates".

Fortunately, I am not potassium restricted because my K levels are low-normal. But if yours are out-of-whack, try to limit 'white' foods: milk, yogurt, cheese, potatoes, white bread. I drink Silk brand unsweetened Almond milk. It has 30 cal, 160 mg of NA, 35 mg of potassium and 0 mg of phosphorus per 8 oz serving. I love the taste. Never having been much of a milk drinker, I actually only use 3-4 oz on cold cereal.

Eating as much fresh food as possible is best, but not always possible. Try to select processed stuff with under 200 mg of sodium per serving. I limit my sodium intake to 2000 mg per day, and like you - any everyone else here, do not add any when cooking.

Restaurants more and more frequently have sheets with the nutritional information contained in their food...even places like McDonald's, Starbucks and Olive Garden. If they don't have them available in-store, you can often find it on their websites (Panera bread, for instance).

Davita.com, which was recommended to you by JayKay777, is an amazing site. You'd be surprised, when you search for foods, how many different brands they have in their data base. I was going to input the info for a Luvo (brand) bean and rice frozen burrito but it was already in there! If you eat something unique, you can enter its nutritional data.

I've written a lot here but what you really need to understand that everyone's nutritional needs are different. You will get a meal plan tailored to your personal needs. You've gotten a lot of advice, which has been very good, especially getting more of your protein from plant-based food and to limit red meat. I eat a lot of fish and chicken besides things like legumes. At your CKD level, the key words are LIMIT and MODERATION, not necessarily ELIMINATE. One of the best things you can do is to learn how to interpret your lab results. Your nephrologist will/should answer every single question you have. If not, seek a different one. It will be the renal dietitian who will really guide you; however, at this point, you may not even referred to one. If you really want one, INSIST. You must be your own advocate because no one else will do it for you.

Best wishes,

Laurie

PS really, go to davita.com

[sandymac8]

Hi Laurie,

Thank you for all your helpful information. I was looking at my blood work and I only see where they checked my potassium which was (3.8) the normal range is 3.5-5.0 all the other things they checked for are in the normal range. I was concerned about my urine sample, I had a high red blood cell count at 6, normal range is (0-2). I have been adding a lot of fresh fruits and vegetables to my meals. I cut out junk food and have never been a big pop drinker, I cut back on dairy, I allow myself one wedge of laughing cow cheese. I really like your sentence about limiting and moderation and not eliminating, because that is what I am also afraid of. I have checked out the Davita site, very informative. I am trying not to jump to conclusions, which is hard not to do, I have always been a worrisome kind of person. I know stress is not good. I worry because I have 2 beautiful little girls I have to take care of and I am just scared to have to deal with this.

I started out at 164 lbs and now I am down to 155. Very proud of myself. Started exercising more also. Trying to stay positive, which I find hard some times. I am very thankful for all your information, it has made me feel a lot better. I just hate the fact that I have to wait until March 7th to see the nephrologist! :O( I am glad for all the support from all the people that have commented on my post.

Do you mind me asking how old you are and when you were first diagnosed?

Once again I thank you for timing your time to respond to me. It means a lot.

Sandy

[Nickinoo1]

My question is how did you all get a referral to a nephrologist? My GP doesn't want to know and like you I'm 49 although had a CKD 3 diagnosis since early 30s. Now got a GFR of 44 with early onset glaucoma & autoimmune thyroiditis.

[sandymac8 in reply to Nickinoo1]

Hi Nickinoo1, my PCP referred me to one, I guess a lot of people don't get referred to one until a later stage, I had my appt on March 7th and she was not to concerned by my numbers, I had more blood work done, and my numbers are above 60 now and my creatinine is now 0.94. She said to keep doing what I am doing and watch my salt intake and keep drinking lots of fluids. If I were you, I would insist on seeing one to get their opinion. Hope this helped! Early detection, the better.

[Nickinoo1 in reply to sandymac8]

Thanks I will. There are folks far worse off than me but it'd be good to talk to someone who knows what they're doing.

If my blood pressure is rising that cannot be good especially for my glaucoma.

I hope you continue to progress xx

[Tackle in reply to Nickinoo1]

I would change doctors! I made two appointments with two separate nephrologist (first one is tmrw and next week is the second one) and I have already reached out to the Mayo Clinic (based on what the two local doctors say.) you gotta be in it to win it! Lolol!