I NEED ANSWERS: Hi my name is Alice I'm... - Early CKD Support

Early CKD Support

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I NEED ANSWERS

Alicehayes
Alicehayes

Hi my name is Alice I'm new to this ckd I went to a ER FOR 1 TGUNG HAD BLOOD DRAWN WAS TOLD I HAD OUT OF RANGE IN MY BLOOD WOORK BUT WAS NOT TOLD ANYTHING ABOUT CKD I WEÑT HOME GOT ON GOOGLE TYPE IN MY GFR WHICH WAS A 52 AND THATS WHEN I FOUND OUT STAGE 3 KIDNEY DISEASR WOW .... OF COURSE I'M UNDER DR. CARE BUT IM STULL WORRUED UPSET CAN I BE REAL PEE OFF I DUE HAVE MY BLOOD WORK DID AGAIN AND NOW IM CONCERN ABOUT WHY DO MY LEGS FEEL LIKE THEY ARE GOUNG TO LET ME FALL CAN ANYBODY HELP ME UNDERSTAND I WOULD APPRECIATE IT

7 Replies

Hi Alicehayes,

I too was in the same boat I was a normal healthy person one day then went for a routine scan and found out I had pkd. The best thing you can do is try not to panic. Your egfr is only 8 marks out of the normal range. Wait untill your next set of results. Ckd can be a very slow process so the way I look abit is why worry now. Plus egfr goes up and down all the time there is many factory that can make it change like diet, amount of water and rest.

All the best

Alice,

I think most of us have felt the same as you do right now. I am coming to the conclusion that the big problem is doctors think ckd stage 3, no big deal, while we hear chronic kidney disease stage 3, and think omg what am I going to do. I think doctors need to ramp it up a bit and we need to take a big breath, find out all that we can about ckd and then do all that we are capable of to get better results.

If doctors and the medical field in general made the general public more aware of ckd, what causes it and ways to prevent it, perhaps not as many of us would get to that stage. If more of the general public knew more beforehand about ckd, what causes it and ways to prevent it, perhaps we would not get to that stage, and if we did, we would have a much better idea of what we needed to do.

Now that you know, there are things you can do to prevent it getting worse. What caused your ckd? I know that high blood pressure, long term use of Celebrex, and not drinking enough water were probably the main culprits for mine (I was diagnosed at 36.6 and improved to 54). What can you do about it now? Diet--low sodium, low potassium, low phosphorous, low protein; avoiding those things that are known to cause problems--I have not have chocolate, dairy, potatoes, tomatoes, bananas, lunch meat...since I was diagnosed; drink lots of water. Another thing you can do is educate yourself about all things ckd.

One thing that I do not think is wise is to turn a blind eye to it. If you do, it will only get worse. If you turn into an advocate for yourself, you have a much better chance of getting a handle on it and turning things around. Stress and worry are not good for you either.

Good luck!

So very right about doctors' attitudes and that they could do really very simple things to make people aware. Think of the money it would save.

Bet117
Bet117 in reply to lowraind

Well said and very true!

So very well stated. Many of us have same thoughts and situation. Thanks for words of encouragement.

sukki
sukki in reply to lowraind

I so agree with everything you have said lowraind. GPs make me feel that I am making a fuss about nothing. Every day in the papers we read about diabetes, cancer, dementia and many other serious diseases but no mention of CKD, why? It’s as though we are the forgotten and not important enough. Is there a stigma to this disease?

I recently feel like I have the weak legs thing too, but don't know how much of it is real vs psychosomatic. Sometimes just getting up from a chair seems an effort and I'm in otherwise pretty good physical condition.

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