hello, so glad I found this site!I am st... - Early CKD Support

Early CKD Support

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hello, so glad I found this site!I am still being seen by my GP alone for CKD stage 2 but should I be referred to a nephrologist/ dietian??

Hazeljjj profile image
9 Replies

I am 37... diagnosed with stage 2 CKD at 36 years (GFR 65) No health problems, BP usually low, definitely not diabetic, reasonable diet, average weight. I was told to have an annual check on my bloods... as of last week my GFR was 60. I have to see my gp in 6 months apparently but im really concerned; mainly as I have no idea why I have CKD. I am a recovering alcoholic but haven't drank for 10 years. Do you suggest I just wait 6 months to see my GP or should I be insisting on a referral to specialist... I will do anything in my power to maintain what kidney function I have and don't want to be wasting time if there is something I could be doing to change something in my life and helping my kidneys. Not sure if im blowing it all out of proportion but reading stuff on the internet is making me want to make changes and get to the bottom of it!! Any advice would be very much appreciated, I cant stop worrying about it!!

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Hazeljjj profile image
Hazeljjj
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9 Replies
bowler profile image
bowler

Hi

I am at stage 3 GFR 39. I asked my GP when will he will refer me to the hospital, and he said when I'm at stage 4. And as your GFR is 65 dont worry yourself too much about it.

Mgt8 profile image
Mgt8

Hi

It's horrible when we're first diagnosed. The first thing I did was to search the Internet for things to help slow the deterioration down. First thing to remember is that not everyone who is diagnosed with ckd goes on to have their kidneys fail.

I'm at stage 4 (GFR 20) my doctor referred me at stage 3 which in talking to others at the clinic, is quite usual. If you are not feeling any symptoms yet, that's great. I was advised to keep an eye on my blood pressure as it was high. There are certain tablets that don't help kidneys either. I was told not to take ibuprofin tablets or any indigestion remedies that are not prescribed by the doctor. At the time, I had cramps in my feet and developed gout. Apparently, both quinine and some gout remedies should also not be taken. O, and for women, some birth control tablets are also a risk. (It seemed that everything I was taking was on the list!)

However, after re gigging my medication we seem to have a balance now.

Food wise, I was advised to just have a healthy diet and to exercise.

Hope this is helpful. The other thing that is useful is to follow this forum. It's surprising what information you pick up that someone else has experienced. Good luck with it all.

vaw777 profile image
vaw777

Hi Hazeljjj...in answer to your question..i.m stage 4 and by sticking to a low protein and potassium diet have improved my creatinine and gfr count.

I insisted on seeing a kidney dietician and it was she who gave me a list of foods to eat.

Until you see one stay off red meat..bananas..potatoes...chocolate and only less than half a cup of milk a day...these are the main items....good luck..you are way in front.my gfr was 28 up to 33 now I feel i.m making great strides....Cheers...Vaw777

phillen profile image
phillen

i imagine being an alcoholic before may have contributed a bit! your gps advice sounds about right they often don't refer you until in the later stages just try to keep your healthy lifestyle low fat plenty of fruit & veg keep hydrated,keep fit , keep blood pressure low etc & most of all try not to worry about it as this can make things worse'you can stay for years at the same level, my hubby was in stage 2 to 3 for about 15 years or so! you sound like you are doing all the right things & doing really well 10 years is a fantastic achievement!

Hazeljjj profile image
Hazeljjj

thank you so much for the replies....I no longer feel like the only person with ckd, didn't realise just how common it was! The information has helped me greatly.... il be back!! Hazel x

manon profile image
manon

Hi Hazeljjj

It seems as though your doctor is monitoring your kidneys. However you are young and something is going on. An ultrasound scan would be a reasonable request as that would show up any changes in size or shape of kidneys. It would also show any blockage to urine flow. Have you had urine tests? In your shoes, I would insist, very politely,(!) for further investigations. Good luck

Manon

Hazeljjj profile image
Hazeljjj in reply to manon

hi Manon... I should of added; yes when I was first diagnosed I had a scan to check structure/ size of my kidneys which came back as normal. I did provide a urine sample also when I was first diagnosed which didn't show anything abnormal (namely potassium). At that time my GP suggested there was some damage to my kidneys but that it was some peoples 'norm' and should it deteriorate to take it from there. Last year I didn't really take much notice of it but as this year it has decreased somewhat I have become concerned. After this years reading I was advised to come back again in 6 months for further blood tests however I have made an appt with my GP tomorrow to get the ball rolling so to speak and get to the bottom of it.....Thank you for your response its much appreciated

jesswecan profile image
jesswecan

Hi, I have just found out that I have CKD 2. One of the things that I have done is buy a water filter that removes the Chlorine and flouride from tap water. By doing this I am giving my kidneys a welcome break. Just make sure that the water filter you buy removes chlorine as not all do. Try to avoid foods high in potassium and anti-inflammatory drugs. It is good that you are proactive in slowing down this condition. Good luck.

nonie2147 profile image
nonie2147

FIRST-START DRINKING GALLON WATER PER DAY-PREFERABLY BOTTLED. NEXT WATCH PROTEIN INTAKE- I HAVE TO KEEP IT AT 40g PER DAY-DIFFICULT. PROTEIN IS NOT ONLY IN MEAT, BUT JUST ABOUT EVERYTHING-ADDS UP FAST. STAY ON THIS SITE- VERY GOOD ADVICE AND SUPPORT. FOR MORE INFO, GO TO DAVITA.COM- HAS DIETS, FOODS TO AVOID AND FOODS TO EAT. ALSO, KIDNEY FOUNDATION OF CANADA IS EXCELLENT. WHAT CAUSES IT- SOMETIMES JUST AGING-I AM 78, SOMETIMES STONES, SOMETIMES MEDICATIONS. CURRENTLY LAWSUIT IN U.S. FOR MEDS FOR ACID REFLUX-PRILOSEC, PREVACID, ETC. DOCTORS REALLY DON'T KNOW THAT MUCH ABOUT IT, OR JUST BYPASS IT. I HAD CKD2 FOR MANY YEARS, UNKNOWN TO ME UNTIL I HAD KIDNEY STONES-UNKNOWN TO ME-NO SYMPTOMS, NO PASSING- JUST BUILDING UP AND OBSTRUCTING ONE KIDNEY FUNCTION. FOUND BY ACCIDENT IN XRAY FOR OTHER ISSUES. GET WORKING ON RESEARCH- FOLLOW WHAT YOU FEEL IS WORKING FOR YOU. ALSO STAY AWAY FROM COLAS. WATER, WATCHING PROTEIN INTAKE, AVOIDING COLAS-A VERY GOOD START. IF YOU START ITCHING, LOWER PHOSPHATE AND POTASSIUM INTAKE. SO MUCH MORE INFO ON KIDNEY SITES WILL HELP. PRAY. TRUSST GOD-ONLY ANSWER AND CURE FOR EVERYTHING.

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