Ckd: Only found out by chance I had ckd... - Early CKD Support

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Ckd

Only found out by chance I had ckd stage 3 when I asked for a print out of my tests I had done over the years.now gp says now we know u have ckd we know to keep an eye on u.yet I have had kidney pains for years and gp dismissed this

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Had similar experience as had blood work indicators that GFR was declining for several years. A new GP diagnosed me and out me on pre-dialysis diet and prescribed exercise. Maybe ask your GP what the next step is for you and inquire about a renal diet that is right for you. Some diets are just phosphorus restricted and some potassium and or sodium.

You have come to the right forum for support.

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Sounds as if your doctor, being embarrassed, found the right slippery words to say to you. Depends where you are from, but in the UK, early stages of CKD are ignored by GPs, and that shocked me. But there is enough support, and including this excellent site, online, to work out how to manage the condition diet-wise at least.

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Not just in the UK!

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I live in UK northern ireland

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I'm in Northern Ireland also and have been in the low to high 50s GFR for months, the doctors have fobbed me off so far, I have symptoms such as constant tiredness, itchy skin, breathing issues and varies colds and infections all the time, the NHS is a complete shambles in the UK.

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So true I'm the same tired all the time infections now pains in kidneys gp says don't worry we know to keep an eye on u now u have ckd stage 3 what a joke .hope ur getting the heat wave to it's been nice here I'm in bangor amy

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So true! I'm in USA & I am still wondering why docs don't say something at CKD2! I would've made changes then. Now that I'm at CKD3, I will stay on it doing all that I can do, so that I have the best chance of staying in this range and not progressing. I do not understand why doctors are so blase about a life threatening disease at its earliest stages.

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My husband has seen patients in the nephrologists office who are in very bad shape. He (my husband) says it is because there are so many people who are in much worse shape. I say if they told us earlier, we could prevent ourselves from getting to that stage. However, then there would be no money involved at the end stages, because we would never get there!

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You are so right! More money to be made in later stages!! I've become justifiably cynical of the medical profession, which has changed so much. I'm on a very expensive blood thinner--retail over $600/month--and the protocol for first provoked or unprovoked blood clot used to be 4 months of blood thinner med & then done. Now, there are studies funded by the pharmaceutical companies that manufacture these drugs recommending staying on the medication for a lifetime! And, this is without knowing ALL the side effects. Think of all the $$$ to be made--that's what drives it all. And, one of those blood thinners, Xarelto, I believe is responsible for my deteriorating kidneys. Hoping to get my hematologist to agree to take me off the medication now.

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I've had exactly the same experience. I wasn't even told....it was only after I'd been referred to a consultant that I was told kidneys were working at 25%, then I googled it. This is a disgraceful state of affairs. Why are GPs behaving like this? If we had been informed at an earlier stage we could have taken steps to slow the progression. What can we do?

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Not just GPs!

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So true x

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I was the same way. It was by accident I found out. I have PKD. I remember one doctor sending me for all these tests then told me I had kidney stones in the "meaty" part of my kidney. Of course no other Doctor ever knew what that meant. I know now, it was cysts he was seeing. I think it's pretty much the same around the world. Doctors just blow it off for some reason. New advances being made all the time.

You are in my prayers. God can do anything.

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I live in the United States and we have the same problem!

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Same thing happened to me here in the US. I had been going to the same internist for 20 years and it turns out that my creatinine had been relatively high even back then, but "within reference range"....around 1.20 creatinine. A year and a half ago, after I was forced to switch doctors because of insurance, my creatinine was finally flagged as high and the gfr was 58. Mental spiral downwards and fears of dialysis and death followed, even uncontrolled loss of weight while trying to maintain muscle mass. Have always been thin. This whole situation totally sucks and the nephrologist can't even give you guarantees that renal diet stops or slows progression. Having trouble getting enough calories without fears of too much protein or carbs (fear of diabetes). Arrrgghhh!

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Marvin 8: The renal diet can be a challenge but in the long run it is worth the effort to slow down the progression. Davita has a good menu tracking feature Without the diet one does not know how much the progression would or could have been. It was good you were diagnosed. Agree it can be a scary diagnosis. Hang in there. You have come to a good forum for support.

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Hello Marvin8, I agree with Orangecity41 and Bet117, we all seem to have found out about our various kidney problems by chance, in my case I was monitored for over 30 years as I take prescribed tablets for v. high blood pressure, then for a further 5 years was also monitored for kidney function as well (without being told about it) and only two years ago was told I had CKD stage 3. I think the shock is that its not until one starts to research it that one realises how complex it is and how it can impinge on one's life. I have done lots of research and have taken steps to ensure I eat the best low potassium kidney-friendly diet I can and do my best to follow recommendations regarding exercise and keeping healthy (I don't smoke or drink but do weigh too much in spite of loosing 70lbs now). I've just re-read your post and see you have genuine fears that you will loose weight and will not be able to control it. This is exactly what is happening to my brother, who has always been slim and was also diagnosed with stage 3 CKD, and he sees a specialist dietician although in UK they are very few and far between in our National Health Service - we have another problem here in that anyone can call themselves a 'nutrionist/dietician' without having any proper qualifications at all! Perhaps in the USA you will find it easier to find a proper renal dietician who will be able to help you allay your worries and make progress in coming to terms with your CKD diagnosis - best wishes and let us know how you are getting on - Curleytop1

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Hi Amy,

Welcome! You are in the right place and among knowledgeable supportive friends here.

Not easy to get that kind of news when you have put your faith in and trust a doctor.

Unfortunately, many dismiss important things which should be brought to the attention of the patient.

I am going through a similar situation with decreasing blood albumin and my nephrologist never pointed it out or how to correct it.

Most importantly, you now are aware and can make informed decisions as how to go forward.

If you can see a nephrologist, do so and obtain their opinion. If you feel a new GP is in order, see one!

You are wise to print out your labs and ask. Bring questions to appointments and jot down answers.

You may also seek the opinion of a dietician. Davita has a dietician at their facilities and also a great website which will be helpful. Keep to a low sodium diet, avoiding red meat and processed foods as canned soups, cold cuts etc. Be mindful of potassium and phosphorus.

The key is to slow down and stop CKD progression.

Orange City gave you some wonderful suggestions and advice.

Please let us know how you are doing as we care!

Bet

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Thankyou to everyone for ur advice x amy

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I'm in the same boat as you, had so-called routine blood tests, phone up for my results, and the receptionist said all are fine, she was just about to hang up when I said can you tell me if I have had my cholesterol done please, well that was to much effort for her, she said I will have to go in and get a print out, well my creatinine level is 143, and my GFR i47, I am a 55 year old male living in the uk, it also says at the top of results that I have to have them repeated in 12 months.

PS I do lift heavy weights at the gym can this be a factor?

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I've been fortunate to find this site but there are so many of us w/CKD w/so many comments I'm getting confused. First diagnosed I lost #10 from anxiety but now that I have control of my emotions now what?

If they don't know what is the cause of my Stage 3 which the GFR runs 55 to 61 how can return to stage 2? I'm perfect weight, vegetarian, exercise, no family history, meds for a sleeping disorder so where do I go from here?

I pray that they find a cure for the millions of us before our CKD progresses!

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Same thing happened to me. Primary care doctor told me that the health insurance company told him to ask me about CKD. How would I know? I didn't know I had it!

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