My nephrologist does not give me any adv... - Early CKD Support

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My nephrologist does not give me any advice !

pepsilulu007 profile image
20 Replies

Hi everyone ! I am new to this forum. I am a french man, 51 years old. I am a bit worry as I am nearly stage 4 and the only advice I've been given by my nephrologist is to avoid salt ( no protein, phosphorus or potassium restrictions ). When I asked her if I had to start checking my food she said no, you don't have to worry about that for now. I am under the impression that she is just waiting for me to be put on dialysis ... Any advice ?

Thank you and sorry to drop in your forum but can't find any good info in french !

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20 Replies
Ahmad_92 profile image
Ahmad_92

my nephrologist advised me also to stay away from salt or at least reduced it to the half,

i asked him about potassium and others he said each case is different, as the potassium level is good in your lab test, maybe it depends on your lab test., another thing is that he always says that, no restriction but do not eat alot of protein and always stay hydrate.

Ahmad_92 profile image
Ahmad_92 in reply to Ahmad_92

Another thing i can suggest to feel comfort, you can consult another doctor regarding your case.

having many opinion will make you find your way to stay healthy.

pepsilulu007 profile image
pepsilulu007 in reply to Ahmad_92

I think it is a good idea. I am no sure she really '' care " about me ... Thanks for your answer.

orangecity41 profile image
orangecity41

I am 78 year old male and was diagnosed at stage 3b. I was put on a renal diet avoiding phosphorus and sodium. Other blood work was taken into consideration. Later blood work showed high potassium so now potassium restricted. Maybe best to get a second opinion and take your blood work results.

Bon Chance, Je parle Francaise un ti peu.

pepsilulu007 profile image
pepsilulu007 in reply to orangecity41

I agree. Second opinion is needed. Merci et bonne chance a vous aussi :-)

orangecity41 profile image
orangecity41 in reply to pepsilulu007

Il n'y a pas de quoi . You will get on the right track.

Blackie57 profile image
Blackie57

I agree the only reason why they leave us is for dialyses there must be some kind of treatment my dr did put me on antibiotics whithout anything wrong whith me and he no its danger for my kidneys im also stage 4 so why are they doing it it doesnt make sense if there is anyone that no of treatment let us no

pepsilulu007 profile image
pepsilulu007

It is sad but they seem to be more interested by the money than anything else ...

lowraind profile image
lowraind

Many in the medical field, nephrologists included, believe nothing can be done to improve the numbers. They are very wrong! Your best path is to educate yourself through research and choose what you believe will best help you. If you click on the circle next to Reply to..., you will find much that I have written about my beliefs and what I do, despite two nephrologists telling me that I only had to avoid salt, stop taking celexicob and drink more. My numbers have improved with my plan.

pepsilulu007 profile image
pepsilulu007 in reply to lowraind

Thank you for your answer and be sure that I am going to read you. I guess it is time for me to change my diet and as you say, educate myself. It's not gonna be easy but you are giving me hope.

WYOAnne profile image
WYOAnne

Many on this site are the same as you, CKD and in stage 3 or 4. Look at past posts regarding diet. Many have seen a renal dietician that has helped them to follow a healthy kidney friendly diet. Some, were about to start dialysis and the diet has actually helped them, by raising their GFR some and are now stable. Someone on this site has been stable with her kidney function for 10 years now.

You definitely need to be looking for a different nephrologist. Remember not only is this your health, but your LIFE. I always tell people to be their own advocate, ask questions and get answers and in your case, you need to be comfortable with your doctor

Also find out about seeing a renal dietician.

I am 19+ years post kidney transplant and am enjoying life!

Best of luck to you

pepsilulu007 profile image
pepsilulu007 in reply to WYOAnne

Thank you for taking the time to answer. You are right this is my health and time has come for a change ( diet and doctor ! ) Best of luck to you too ! but I think you are already on the right path :-)

Beckett24 profile image
Beckett24

Hi, pepsilulu007,

I was fortunate enough to see a renowned La Jolla, CA (where rich people live) nephrologist who graced the Sharp-Rees Stealy Medical Clinics in San Diego, CA twice a week with his medical godliness as a part-time medical consultant about eight or nine years ago. I was Stage 3A at this time with a GFR in the high fifties.

Please get a pen and paper ready for the incredibly insightful and detailed advice that he gave me and which I will now pass on to you. I will wait, but please don't peek ahead until you are ready...

.

.

.

.

.

.

.

Seven dots for 007!

He told me to "watch the salt." He didn't even say sodium, LOL. Yes, I know salt is Sodium Chloride, but everyone in the Health industry says sodium.

He also muttered under his breath, facing away from me, "You'll probably die of heart disease first."

Educate yourself and take care of yourself. I did and my GFR is back up to 56 on 4/22/19 when it was 44 on 12/28/18.

If you care to see how I did it and my latest lab results, here is the link to my post on HealthUnlocked:

healthunlocked.com/nkf-ckd/...

As M said to James Bond many times, Good luck, 007.

pepsilulu007 profile image
pepsilulu007 in reply to Beckett24

Hi Beckett24 !

First, thanks for putting a smile on my 007 face :-)

Your latest lab results are amazing, your are doing great !

I now understand that I need to educate myself and not waiting for my nephrologist non-advice !

It's funny because yesterday I found Lee hull's book on amazon and downloaded it. It's a bit technical and not easy for me to read ( remember I am french, french bond but french :-) )

What I understand is that I have to stop eating animal products which I believe is the first best thing I could start with. But he also says no to eat grains ( I may be wrong, I did not read the all book ). In my case, as I hate veggies, I would be left with not a lot to eat ...( love legumes but they are too high in potassium/phosphorus ).

Do you think I could keep some bread and pasta/rice in my diet ?

Once again thank you for taking the time to answer and all the best.

Beckett24 profile image
Beckett24 in reply to pepsilulu007

Hi, pepsilulu007. You are most welcome. The only really bad parts are the case studies which you can skim, skip, or just read the conclusions. You may think about buying the paperback, since there are so many tables and sections, it's a lot easier to navigate the book with a paperback than a Kindle version. And your English is better than most of my fellow Americans (and I have read tens of thousands of posts since I also visit a world famous gaming/entertainment website for the articles and to read the posts on a daily basis (since 1998) - it's IGN.com - you should visit it), so do not sell yourself short on your English, it is excellent.

I also hate vegetables, except mashed potatoes with butter and French fries which are really bad for you, LOL, I stopped eating those, but I eat the ones I hate because I know they are good for me. I have gotten my great lab results by mostly following the Mr. Hull eating program, but I am only human. I did NOT eliminate oatmeal, bread, and pasta. But I only had them a few times per week in moderation. I was also trying to ease myself into Mr. Hull's eating program since it is so restrictive, I may just continue to do what I have been doing. Remember, I also had the Kirkland Cookies and Cream Protein Bars (available on Costco.com - I do not know if Costco ships internationally) a few times per week which are dairy since they are whey based.

I personally believe that if you follow Mr. Hull's program to the 80-90% level you will see dramatic, positive results like I did. The real main thing is to cut out all meats (including fish and poultry) and all dairy. And please cut out high fructose corn syrup - I ate lots of Jelly Bellies (jelly beans) because they are one of four candies allowed for CKD patients and I got Gout on 4/26/19. It was the second Gout attack in my life! I then did research and found out that high fructose corn syrup (which is in Jelly Bellies) can lead to Gout attacks.

I also got some of my protein (20 grams per day) from the Orgain Organic Vegan protein powder (available on Amazon), which I mixed with real fruit juice (no high fructose corn syrup), frozen berries and ice.

You can also enjoy many delicious fruits, not just vegetables.

And don't forget daily exercise, drink half of your body weight in water (in fluid ounces, not in pounds, LOL), keep the sodium under 1,000 mg per day, and weight loss if needed!

Let me know how you are doing and how your next set of labs go.

pepsilulu007 profile image
pepsilulu007 in reply to Beckett24

Hi Beckett24 !

Thank you for your precious help. Makes it easier for me.

I try to stay away from any added sugar ( need to lose weight ) so I already stopped eating candies, cakes ... :-(

80-90% level should be fine ( as you say we are only human ).

My next lab tests are only in 3 months time and hopefully they will come back better.

Keep in touch.

French fries, mashed potatoes, jelly beans ? really ? are we twins ? :-)

Beckett24 profile image
Beckett24 in reply to pepsilulu007

Hi, pepsilulu007,

You are most welcome. I made a bad grammatical mistake in my last post: I should have written "next set of labs goes" instead of "next set of labs go," it is only one set - the set goes. See? We all have trouble with English! LOL

I also love Lasagna and Pizza, of course. Here in California, unless you go to a very expensive restaurant, you will get horrible food. I understand the food in France is delicious. I only had one French meal in my life and I will never forget it. It was in Encino, CA (in Los Angeles county) in a very nice, expensive restaurant. I had lobster but it was lobster pieces in a delicate, flaky pastry with sauce on top (of course) and lobster bisque. It was incredible. So, yes, we are twins.

Losing weight is one of the hardest things to do in my opinion. Doing it in a healthful manner that makes you change your eating habits takes a long time and everyone wants to lose 10 pounds in one week. I lost 30 pounds in about 12 weeks by staying under 1,500 calories per day - usually closer to 1,200 - while on Mr. Hull's program with my minor cheats. You will feel hungry, but it will be worth it. Don't forget to exercise, even walking helps, but I understand in Europe everyone walks everywhere.

Don't forget to drink lots of water (I love Perrier), and to really cut down on the sodium. Let me know how you are doing. Good luck, 007.

pepsilulu007 profile image
pepsilulu007 in reply to Beckett24

Hi Beckett24 !

I forgive you for the mistake LOL (didn't even see it ! ). True that we are lucky enough to still have places where we can have good food without breaking the bank LOL but it's time to say goodbye to bœuf bourguignon and blanquette de veau ☹️.

I Also love lime Perrier ( Can you beleive it ? 😁 I drink it everyday but it is probably a bit pricey in California.

30 pounds loss is great ! congrats ! Would be happy with that ( Also I have much more to loose ).

Thanks again.

Keep un touch.

AKCLady profile image
AKCLady

My husband is stage 3 and also seeing a nephrologist. A very good one. Diet is critical. Also, avoid any pain relievers except acetaminophen for any pain such as arthritis. All others clear through the kidneys. Do you know what caused the kidney disease? In our case, prostrate blockage caused back up to kidneys and damage. A simple procedure fixed it but damage is done. Now it is to maintain at level 3. As the family chef I am trying to balance kidney, heart and diabetes diets. My advice would be to also consult a nutritionist. I don't think doctors get many classes in nutrition so that is something a specialist could help with as well. My husband has been able to stabilize and maintain his kidney health. Low potassium is critical. Limit white sugar and other white foods like potatoes, white breads, etc. Don't wait until it is too late. Follow a good diet now. Low protein but lean meat was recommended to us. There are several good online diet groups for kidney. Maybe you could find one to help with menus. Good luck. And yes, I agree, if you are feeling you still have questions, see another doctor.

pepsilulu007 profile image
pepsilulu007

Many thanks for your kind advice. In my case, CKD comes from years of diabete and high blood pressure. My nephrologist is useless but I am learning more and more everyday.

I know now the importance of a good diet and I am working on it.

I wish your husband and you all the best.

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