Early CKD Support
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eGFR 39/40 but GP doesn't seem concerned.

My husband returned to GP yesterday with results of abdomen/kidney ultrasound which showed kidneys slightly shrunk 8cms, cortical thickness 9mm right 11mm left. I asked if he should see a nephrologist and she said no, only if eGFR goes down to 30. She hasn't tested for potassium or protein. She didn't mention diet until I asked and then gave us an information sheet about low salt diet. My husband is 82 and I know eGFR does decrease with age but not to this extent. The GP hasn't searched for a cause either. I would appreciate your views.

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I am 76, male, and diagnosed with CKD at stage 3b. My GP put me on a renal diet and medications for cholesterol and triglycerides (zetia and omega3). So far the progression has slowed down. I get blood work every 6 months to monitor it. A primary cause for my CKD is BPH. My Urologist is monitoring my CKD also. Hope this information is of some help for you. I am also on original Medicare(part B supplement). Medicare Advantage Plans might have different treatment plans?

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Hi Tricot. I am aged 50 and I have CKD stage 3. I had my six-monthly blood test in January and my lab work came back with an eGFR of 43 and creatinine level of 30. My GP told me not to worry and have a blood test again in six months. I only saw a nephrologist back in 2005 when my kidneys packed up and after a year I was discharged. I now get two blood tests a year and being looked after by my GP. Not been put on a special diet but I do watch what I eat, don't use salt at all, watch my protein and cut down on potassium based foods. 13 years later I am still stage 3. Hope this helps.

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Hi, there seems to be an unwritten rule in the UK that nothing gets done until you reach stage 4. Then they want you to do a biopsy. This site has been more useful to me than my nephrologist. DaVita is also a very useful site. Good luck!

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It is not just in the UK. It pretty much depends on each individual general practitioner and then, if you are referred, to each specialist. Each of us has to take things in hand and learn and do what we need to do to help ourselves! Yes, this site has been very helpful to me, also.

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Good analysis lowraind. Agree important to be proactive.

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My first though is that you need to find another GP. I was informed that I had CKD when I was at 36.6 and I am not happy that I was not informed earlier. I have been able to bring my numbers up to a 54 in four months, but would have liked not to have been as low as I was. I realize that GPs are generalists, but a good generalist refers you to specialists a lot sooner!

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Wow, lowraind, that's terrific improvement! Care to share your secrets?

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I would be glad to share, but they are not secrets;

--On October 2nd,2017, my PC referred me to a nephrologist. This PC had just began to care for me in June, since my previous PC quit the practice. The new doctor had begun to track kidney function when she first saw me. I again saw her in Sept. and in Oct., she referred me.

--On November 1st, 2017, I was seen by a nephrologist who informed me that I had CKD, stage 3. He told me to take my blood pressure every day, to drink more water, to stop taking celebrex (which I had been taking for a very long time), to have an ultrasound and to come back in a month. And, that is all. I saw him again at the end of November, after the 24 hour urine collection, and at that time, he did not tell me much more.

--So, being who I am, I went home and googled and read and googled and read. I also began compiling a list of questions, for the P.C., for the nephrologist, for whomever would listen. I did not get a lot of answers. I then requested a meet with a dietiTian, and after calling two more times, I did get a referral. That did not tell me much, as she was a diabetic dietitian and not very knowledgeable about kidney disease. She gave me a bunch of sheets that she had printed out from the Academy of Nutrition and Dietetics, and that was it.

--Through my searching, I sound a lot of information, this site, DaVita.com, and various so-called experts. I have to say that there is a lot of information out there, a lot of far out advice, some quacks (as far as I am concerned), quite a bit of out-dated information, and some sources that I am willing to follow, while at the same time trying to determine if this is the best thing for me. For the most part, anything before 2015 might be out-dated.

--Resources that have helped me:

- The doctor's kidney diets : a nutritional guide to managing and slowing the progression of chronic kidney disease / Mandip S. Kang, MD, FASN;

-Renal Diet Cookbook for the Newly Diagnosed: The Complete Guide to Managing Kidney Disease and Avoiding Dialysis

by Susan Zogheib

These were the first two books that I read and used. The first was from the library and I purchased the second.

-I have used the DaVita site, but I also check the amounts of sodium, potassium and phosphorous in the recipes, and some I decide not to use;

-Every new entree that I plan on preparing, I list the name of the entree, and then either follow it with ckd, or precede it with renal friendly or kidney friendly. This is time consuming, but I then have a pretty good idea of what is going into my mouth and through my kidney.

-One of the names that came up often through my searches is Mathea Ford, RD/LD. I have found that her books have been quite helpful. The ones that I have so far are:

-Living with Chronic Kidney Disease--Pre-Dialysis;

-Create your Own Kidney Diet Plan (which I have done in order to track sodium, potassium, phosphorous and protein, as well as carbs and calories);

-and her last book that I purchased, The Kidney Friendly Diet Cookboook.

From my various searches, I have various lists that I will get back to or that I found important. They are:

--Links regarding CKD;

--Food sites, ckd;

--New to Kidney Disease--questions to ask;

--Healthy Foods for People with Kidney Disease;

--Stopping Kidney Disease;

--Snacks for a Kidney Diet.

The last things that I have started to do is delve into my drug interactions list and I am taking a Kidney Smart class this Tuesday. Oh, I have also changed my nephrologist and am still not totally happy with the new one. I may give her one more appointment, or, depending on what I find out on Tuesday, I may not.

Sorry this is so long, but you did ask for my story. I am sure there are others on this site who have similar stories to tell, and I am glad that one of the other members of this site has asked people to share their stories.

Hope this helps,

lowraind

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Thank you for your replies. I'm concerned that no-one is searching for a cause as my husband is not diabetic, has low cholesterol and doesn't have high blood pressure. I think you're right that GPs vary a lot and are not specialists. We can become better informed than they are on particular aspects of our health but then it's a question of getting them to take notice.

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My kidney majorly shrunk in size and was picked up in ultrasound and CAT scan. I had a 6 mm stone that wreaked havoc

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Hi there. I am in the UK and in 2012 it was then discovered an issue with my kidney function then at 55%, come February 2013 it dropped to 50% then they referred me to a nephrologist. I am aged 49 years old now and currently at stage 4 at 20%, however it's been at this level for over a year now and its holding out, hopefully the numbers can still improve at this level, I am hoping so. The cause of my CKD is long term high blood pressure (now controlled on 3 different bp meds) and I also suffered reflux kidneys when i was a teenager with many infections which have caused scarring on both kidneys, one kidney is at 8;4 and the other 10:6. Make another appointment with GP and tell them you would like to be listed for a referral as it maybe sometime before even getting to see one, hope they do this and good luck x

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Thank you, dizzydi. I hope you manage to maintain the improvement. We're in France. Several years ago my creatine went up to 13.5 and my then GP (still in France) referred me to a nephrologist and yet my husband's level is so much higher yet doesn't seem to warrant a specialist. I have to choose my battles as I was thrown out of the last GP's surgery because I asked for specific blood tests for my husband. My husband has several health conditions and I think we may take the decision to just go over the GP's head and pay for private consultations with specialists. Then you just have to hope the specialists are on top of their game. I've lost so much faith in the medical profession. Good luck to you too.

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Hi Tricot, have you got proteins in your urine? From my experience your results definitely indicate the need to see nefrologist. I had much higher performance of my kidneys when I was reffered to nefrologist. Now I am after kidney biopsy and my eGFR 37 ml min/ 1.73 m2 and creatinine 1.7 mg-dl. I was advised to undergo kidney biopsy 8 years ago though.

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Hello christiau

The GP didn't give any urine tests. Are these advisable? We've been back to the GP trying to convey how his symptoms are causing such a poor quality of life and she was very unhelpful, saying nothing more could be done. We now have an appointment end June for a CAT scan for abdomen, thorax, pelvis. I wish you well.

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HOW ABOUT A CHANGE OF DOCTOR.EASY TO DO JUST LEAVE..YOU NEED ADVICE AND HELP..NOT WAIT AND SEE..REGARDS...

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Not easy at all. We live in rural France and there is a shortage of GPs. We've already changed once and it was very difficult to find another GP to take us on.

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hi thanks for reply...maybe if you pay to see a specialist or medical.to put mind at rest..and confirm what position you are in..this would shine more light on your position..regards chris

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Thank you. We have the CAT scan on Friday so will wait to see what that shows up and then pay to see a specialist.

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great glad to help..regards chris

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