Rapid decline of EGFR

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Rapid decline of EGFR

Postby Marco77 » Mon Jan 23, 2017 5:28 am

Hi,

I am a 39 year old male which has been diagnosed with hematuria and protenuria in late 2014.
I started visiting a nephroligist in April 2015 who confirmed that I had protenuria but my creatinine was 78 and egfr 103 so I was told not to worry as my results were good.
I did another exam one year after in April 2016 and my levels dropped to creatinine 95 and egfr 82. My blood pressure increased to 140/90. The nephrologist told me that they couldn't understand the cause of it, it might be an inflammation. I dont take any medication and eat healthy.
I then moved to another country and did new tests in December 2016. My levels dropped further to creatinine 110 and egfr 73. My blood pressure is 130/90.
I am waiting to see a nephrologist but it is taking months and still I didnt receive a date for the appointment so I dont know when I will be visited.
I started limiting proteine and sodium from my diet. I also quit all alchol and I dont smoke.
I am concerned that the neprologist will tell me that as my egfr is above 60 "to wait and see".

What are your thoughts? What are my chances to arrest the decline?

Thank you
Marco
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Re: Rapid decline of EGFR

Postby wagolynn » Mon Jan 23, 2017 4:20 pm

Hi Marco77,

Only reduce protein if advised to do so by your medical team, you must have sufficient in your diet for your body to make repairs, and other maintenance. This link may help http://www.kidney.org.uk/help-and-info/ ... -proturia/

Sodium - if you eliminate added salt, whist eating, and cooking food, you will be OK, our normal foods have sufficient sodium in them for us.
Watch out for soft drinks , and health drinks many of them are loaded with salt.

The two together suggests to me, I am not a Doctor, some sort of kidney infection or kidney stones.

Best wishes.
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Re: Rapid decline of EGFR

Postby Johnylefox » Mon Jan 23, 2017 11:20 pm

Always make sure you are hydrated for testing as dehydration may affect eGFR results.

I was told never to get hung up on a specific eGFR number, but to watch the trend.

Your trend is downwards.

NOW is the time to request a diagnostic test of some sorts, especially if eGFR has gone down again.

If you are hopping between doctors they may not be fully aware of the trend. You need to take a copy of all previous results to the next nephrologist.

Get them to test you and tell you what the outcome of tests is. Ignore people who make suggestions for diagnosis/prognosis. It takes 5/6/7 years to qualify as a junior doctor.

FYI my eGFR went from 50 to about 5 in the space of 6 months.
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Re: Rapid decline of EGFR

Postby Marco77 » Tue Jan 24, 2017 12:58 am

Thank you for your comments. It is nice to read them.
Today, I called the nephrology clinic and they want to give me an appointment in three months. I complained and sent them all the previous results asking to be seen asap.
I will let you know how it goes.
Cheers,
Marco
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Re: Rapid decline of EGFR

Postby Marco77 » Wed Jan 25, 2017 7:31 am

Hi all,
I managed to get a visit with the nephrologist on 28th February.

I beleive that I have IGA nephropathy. I had some haematuria which was discovered at 18 during a visit for the army but I didn't pay attention to it.

Then, I did an employment visit in 2006 (10 years later) and again I was told that I had proteins in urine but I did nothing again as I was feeling well.

Up to April 2015 my eGFR was 103 and then it started dropping fast up to 73 last december. I lost 30 points in 19 months.

I just hope that I will be sent to do a biopsy soon and start taking drugs to keep the values stable.

I am scared...
Marco77
 
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Re: Rapid decline of EGFR

Postby Trisha » Wed Jan 25, 2017 6:53 pm

My husband had a biopsy when his kidney function was declining. He was in hospital at the time as the eGFR had gone down rapidly to 15. If they had done the biopsy at an earlier stage they would have discovered that he had Anca vasculitis and they might have been able to save his kidneys. As it was they tried giving him high doses of strong steroids but it was too little too late and he ended up on dialysis. I would ask if it's possible for them to do a biopsy to find out exactly what's going on with your kidneys. It could be something simple or something that can be treated before it gets any worse. Don't let them put you off.
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