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Postby Layla » Thu Jul 28, 2016 12:08 pm

Have just been told by doctor, out of the blue, that I have stage 3 kidney disease. Went home in shock. Have calmed down now but would be grateful for any constructive information anyone can give me as to what I am facing here. Please bear in mind I know nothing about this but would like to know how I can help myself to stay well. :D
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Re: Help!

Postby AmandaClare » Thu Jul 28, 2016 2:04 pm

Hello Layla, and welcome to the forum.

I'm sorry you've had such a shock. Unfortunately no-one can tell you anything without knowing the cause. How your disease might progress, how quickly or slowly, whether there's anything you can do to slow or stop the decline- all depends on the underlying reasons.

Are you getting a referral to a nephrologist?

Alports Syndrome
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Re: Help!

Postby cspringer479 » Thu Jul 28, 2016 2:26 pm

Welcome to the forum. Have you tried consulting other doctors to see if you really had a kidney problem? Try to have second opinions so you are sure of the illness you had and for the proper medication.
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Re: Help!

Postby Layla » Thu Jul 28, 2016 4:12 pm

Hi everyone. No. I have not been referred to a nephrologist. My doctor says she manages it until I go to stage 4. At the moment I am just having blood and urine tests. I have had an ultra sound and kidneys are normal. Am a really fit 64 year old woman. I eat a good diet, walk a lot and generally look after myself. I have no other health problems. According to the doctor it is just one of those things. Seems my kidney function has been on a downward slope since 2012. Am just frustrated because I can't find anything that will stop this happening.
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Re: Help!

Postby Johnylefox » Fri Jul 29, 2016 6:28 am

You MUST see a nephrologist as they need to determine the cause and therefore the likely intervention required.
I was Stage 3 when I went under the care of a nephrologist.
Ask yourself who is more likely to slow the progress, an kidney expert or a general practitioner?
You doctor is being selfish or ignorant.
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Re: Help!

Postby Layla » Fri Jul 29, 2016 9:37 am

Hi everyone. Have taken on board your answers and think I will make an appointment with the doctor and ask if she can refer me. Thank you to everyone who took the time to reply.
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Re: Help!

Postby rheaybou » Fri Jul 29, 2016 10:17 am

I would suggest that a referral is asked for, however the kidney will see a decline in function as we age and this could be the case here. However it could be an underlying condition that if treated and monitored to prevent any further decline.

Good luck in your search for answers.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

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Re: Help!

Postby SKM23435 » Fri Jul 29, 2016 12:53 pm

Hi Layla,

I'm afraid I'm going to disagree with some of the ideas you have been given.

I'm not sure the answer is as simple as "go and see a nephrologist".
As rheabou says renal function declines with age. If GP's referred everyone with CKD over the age of 60 to a nephrologist the service would be over run and there would be no appointments for those who really do need a nephrologist opinion.
GP's do usually manage CKD stage 3. There are NICE guidelines on when they should refer stage 3 to a nephrologist (from memory if renal function drops by more than 5% a year, family history, protein urea, uncontrolled bp, anaemia ). I looked it up a few years ago. I guess GP's manage a lot of it. Most cases are not due to sinister causes and most are not going to cause the individual a problem. It helps to be aware so you can avoid curtain drugs (eg ibuprofen) and to do the obvious - healthy diet, reduce salt, don't smoke.

So in my opinion it's important to be monitored. As you've now had time to think about it, write a list of questions and go back and chat with your GP. It's the rate of change in your eGFR that is important. If you are feeling enthusiastic look up the NICE CKD guidelines.

Best wishes
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Re: Help!

Postby JMan » Thu Aug 25, 2016 9:15 pm

You might want to have a look at the NKF (medically checked) info. In the UK 1 in 10 people have some for of CKD (chronic kidney disease) but that doesn't mean all are in need of specialist care.

Make a list of questions for your next GP appointment and keep well:) ... srf-intro/
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