Early CKD Support
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Angie55555

Hi

Have not long moved. My new doctor after a routine blood test found i had CKD stage 3. He ask how long I’d had Kidney failure. I was stunned I was not aware of having this condition. The records he has from my old doctor only go back to 2015 and apparently I had this condition then. Ive been offered no support. Just been told to come in for another blood test next year. I don’t know what GFR is. The diet seems very complex from reading posts here. Glad I found this site don’t feel so alone now. I don’t know the way forward.

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Hi Angie 55555

First of all, don't panic. Stress will worsen the situation.

Second, if you had this condition in 2015 as well, then why weren't you informed about it. Several things can cause ckd, high blood pressure, diabetes, drug abuse, injecting of radiocontrast dyes, side effects of some pain killers, sedatives, acid reducing drug, laxatives and few more.

So basing on your past records you need to avaluate.

Change your diet, low protein, low sodium, low potassium and low phosphorus. Regular serum creatinine check up. Limiting your fluid intake.

And avoid red meat, chicken, nuts, potatoes, tomatoes, legumes pulses, milk and milk products, and consume more of apples, pears, guavas and leach vegetables before cooking and don't use too much of oil or sugar or other sources of fat.

Thrice a week have fresh water fish and don't use too much of sodium.

Don't worry as your diet improves your serum creatinine will also improve and egfr.

We all will sail through. Don't be scared. There is nothing to be scared.

Take care.

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Thank you Saaba for your advice. Have been looking for a diet cook book that’s not too complicated.

Take care

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Hello Angie55555, Have a look at PINTEREST.com - if you google in things like 'kidney-friendly diets' or 'low potassium diets' etc. you will find loads of images of foods come up which you can pick and choose from, and adapt to your needs, I find them useful to give me ideas of what to cook at the very least - the downside for me is that the quantities mentioned are usually family-sized and it can be difficult to make them single-portioned or to find something suitable for freezing in portions! Best wishes - Curleytop1.

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I too had similar experience after moved and went to a new Doctor. I was diagnosed at level 3 also. It was a shock. Lucky to find a Doctor who could diagnose it. Doctor has experience with Chronic Conditions.

The GFR is a measure of what level your kidneys are functioning.

You came to a good forum to get information and share experience on the CKD journey.

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Yes Angie that's what they do. I wasn't told until I was well into stage 4....then they want to do a biopsy (1 in 2000 chance you can die during this procedure) I declined.... Got on this site cut out salt and started drinking more water and tea. Now egfr seems to be hovering around 25.... which roughly equates to 25% kidney function. I'm told at my age egfr of 60 would be normal. (I'm 64).

Good luck.

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Many of us have gone through the same thing. It seems that the belief of many of the personal physicians and nephrologists is that stage 3 is no big deal. In fact, they say that nothing can be done and they will just wait until it gets worse. Fortunately, many of us who have ckd know that we can do something and we are trying to protect our kidneys.

Regarding cookbooks, I have three and none of them has been very helpful. Once in a while I find a recipe that I use. What has been much more helpful to me is to search for the meal that I want to prepare, using terms renal friendly or kidney friendly before the term, or ckd after the term. Many people on this site use DaVita.com. The other thing that I do, now that I feel a bit more sure of myself, is to use a regular cookbook (particularly my husband's diabetic cookbook), and make changes that are more kidney friendly (especially salt).

Finally, just as many of us have done, you need to absorb as much information as you can. Learning more about the disease will help you feel more confident and it will enable you to be your own advocate and to help your kidneys.

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Hi Lowraind

Thank you for your message. It’s early days for me yet so I will appreciate any guidance you can give me.

Take care

Angie

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I have tried to send a long response but don't believe it posted. If not I will repeat if desired

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Hi Motolas

Yes I would like you to post again please. I need all the advice I can get.

I’m in the Uk, there does not seem to be any guidance on foods etc. I did not know I had CKD it came as a shock to me. All my doctor said to me was we will do a check in a years time. With the diet I don’t know what my potassium phropherous levels are.

Angie

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Sorry for the delay. You have been given good information re diet choices by others. I will give you some of my best information which I do not want to be held responsible for. Your Nephrologist and a good renal nutritionost should help you deal with your particular case of CKD as here are several causes, such as damage by infection, damage by a medicinal drug, damage by an operation, family history etc.

Read as much literature on the subject of kidney disease as you can. Get fully educated.

Some things I suggest you consider to control or delay increasing creatinine level are:

Moderate exercise such as walking daily at about 2.5 mph for 30 minutes. Moderate muscle toning is ok. Avoid rigorous exercise that will breakdown muscle as it will increase creatinine in general over a period of time also, particularly prior to a blood test.

Make sure you are well hydrated prior to a blood test.

Do not drink any cola products, even diet colas as they contain phosphoric acid which will increase your phosphorus level.

Keep your BP under control with advice by a nephrologist. High BP places a strain on the small blood vessels, (glomeruli) , of kidneys which can cause breakdown. Stress will increase BP but as you know it’s sometimes hard to control. If you need a medication, you should use one prescribed by your nephrologist. Worrying is common but I suggest it is a misuse of your imagination. Enjoy life every day. There are many other diseases which you may not be able to try to control.

Your gfr level which is the rate at which the glomeruli can filter blood to remove toxins such as creatinine. Google gfr calculator and use to calculate your gfr. You may find several, Enter your creatinine level as mg/dl, weight, age, race. The formula will give you a gfr level. Consult with a good nephrologist who will advise the level at which you might have to consider preparing for dialysis. People live for many years under dialysis should it be necessary. You can also place your name on a kidney transplant list. Many are waiting and matching types limit donors. Often age is a limiting factor for acceptance.

You need to eat some protein for general health. If you are at stage 3, limit daily protein to about 0.8 gram per your kilo weight (kg), which is calculated: your weight in pounds divide (./.) by 2.2. Example 170 pounds ./. 2.2 =77. 77 x 0.8 = 62g. If your creatinine level rises to about 2.1 which is beginning stage 4 limit protein to 0.6 g/kg. thus 170 pounds ./. 2.2= 46 g protein. You can determine the protein content of foods by a Google search. It is not equal to the weight of the protein you eat. Thus 3 ounces of chicken which is roughly 90 grams is less protein than 90 g. Good quality protein is important. Red meat breaks down to more creatinine than other forms. Fish and chicken as well as vegetables are good sources.

Look at this site which will give you info on stages of kidney disease:

freseniuskidneycare.com

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Hi Motolas

Thank you for this, I really appreciate you going to the trouble of re doing it.

Keep in. Touch

Angie

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Hi everyone

What I need to know is the foods that have high potassium & phosphorous.

All I see is eat more veggies & fruit. But some veg. & fruits are high in potassium

but also fruit being natural sugar raise my blood sugar. I have to be careful with

that part also. So seems like what may be good for CKD is bad for blood sugar.

Seems like one can't win. I either treat my diabetes or treat the CKD. Does anyone

have multiple health conditions? And how do you treat it?

Great forum

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That's the dirty little secret that folks don't like to talk about, Annica. If you religiously follow a renal diet and diabetic diet, there's no way you can maintain muscle mass and weight, and you'll continue to shrink. Doctors don't like to talk about too often, especially to folks who like to exercise. And worrying exacerbates the problem. CKD just sucks.

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Hello Annica, I have only just read your post re needing to know which foods are high in potassium and phosphorous and no-one has really replied with an answer. You have not said in which country you live, so my advice is just general. I just have to watch my potassium and am not diabetic but I think my way of finding out the information you need would work for anyone in any country. I was given no advice on diet by my doctor or at the renal clinic of the local hospital which I was sent to, so I do sympathise with your dilemma. What I did was to google in 'potassium content of foods' and you could do the same with phosphates. Like me, you would probably find several sites posted by the renal departments of hospitals in your country which have useful info. on diet, but again I can't really recommend any particular site as I am not diabetic - if you live in UK I assume you have access to a specialist diabetic clinic or nurse so a good idea would be to contact them (or ask your doctor for a referral to try to get them to give you some help - your position is far from rare). They should be able to give you proper guidance on what to eat so you could stop worrying so much. In the meantime keep researching your questions on the internet, but be careful of the sources you use - there are various sites trying to sell 'miracle cures' like herbs,special foods, books etc. but avoid them - there is no cure, one just has to learn to live with it and work to lessen the impact on one's life. With best wishes, hope this helps a bit - Curleytop1. Please let us know how you get on, there must be many people who have just the dilemma you have!

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hi angie..if you have any worries with doctors ask to see a specialist.push if you get a no..demand updated records from previous doctor..theyshould be up to date..egfr is the calculated filtration rate of two combined kidneys so if you have an egfr of 100 you have two kidneys working at 100 percent.if you have a egfr of 50 you have one working at 100 percent.hope this helps regards chris

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