Worried and Angry

[MrsP70]

Hello everyone I am new to this site and angry that I have never had any advice from My Doctors.

In 2009 I was diagnosed with stage 3 CKD but not told about it until 3 years ago my new Doctor picked this up and I have yearly bloods and he just said we will keep an eye on things , no dietry advice etc. or how I could help keep myself healthy.

So , at the end of April I had some blood done and was recalled for another blood test, middle of May had that done and was again recalled whilst on holiday I go on Monday to see whats the matter, things must have changed.

I am 70 , I have been amazed by some of the information I have now found about kidney disease and diets and cant understand why patients are’nt sent to see a dietician straightaway.

hope this isnt to long 😀but there is much more I want to tell you but will leave it there fir now

[Bassetmommer NKF Ambassador]

Hi MrsP70.

Welcome. Many patients are not told of CKD until stage 3 or later. It isn't just you and it is frustrating.

The good news is that through diet you can often maintain your kidney function. I would highly recommend you request and then see a renal dietician who can tailor a diet specifically for you. There is a lot of information out there on the Intranet, but diets should be formulated to meet the needs of the patient.

Tell us how you are doing and if you have questions, let us know.

[MrsP70 in reply to Bassetmommer]

Thankyou for the reply I am going to take a list of Questions on monday and I am going to ask to see a renal dietician .

I also think I need to make a note of the results

[Hidden]

Welcome to the community MrsP. There are many of us here who share the same complaint as you. I've had CKD for almost four years but was only told two years ago. I've done a lot of research and have stabilized my GFR over that time to an average of 48. Would have been higher if I was told sooner. My current nephrologist will be leaving his practice this summer/fall and taking a teaching position of new physicians and especially new nephrologists and will be making it known to all that informing his students that early knowledge of CKD can improve the chances of their patients in making lifestyle changes soon enough and hopefully many of them can avoid dialysis for much longer.

Become your own advocate and learn all you can.

[rabbit01]

Hello, your experience sounds the same as mine. Was diagnosed at 17% 4 years ago but have never been given anything to try and slow progression and not seem a dietician despite asking. I have learned more about CKD and how to manage it through this forum than I have ever been told by my doctor.

[MrsP70 in reply to rabbit01]

i have high blood pressure too.

Its lovely to find kind and helpful people on here 😀

[lowraind]

Welcome to the group. Many of us have gone through the same thing, but please, do not let your anger get wasted on something you can't change. Use that anger to propel you to do all you can to improve your kidney function. I was diagnosed 2 1/2 years ago when my new physician saw that my kidney function was decreasing. She also sent me to a nephrologist. I also have high blood pressure and I have osteoarthritis and had been taking celebrex for many years.

The nephrologist took me off celebrex, told me to track by bp and to drink more water. That's it. I then began my research and discovered that I can help my kidneys to function better. My 2nd visit to the nephrologist did not go any better and I requested a new one. I have seen the new one four times, and although she has given me very little advice except for telling me not to deprive myself of anything, I go through the motions of a doctor visit and then go back to what I have been doing. My gfr improved almost 20 points, so I figure that I do know what I am doing. By the way, I am 77.

There are many wise people on this forum. If you want to look back at what has been written in the past, click on the circle next to their name and you will be able to read much sound advice. Also, when you ask to see a renal dietitian, make sure that is who you are seeing. I asked for the same and was sent to a diabetes dietitian and even then, three months after I was diagnosed, I knew more about what I could and could not eat than she did.

People are here to help you so do not hesitate to ask us for help. This is a list of questions that DaVita posted: davita.com/education/kidney..., although I do not agree with question 7 because not one can answer it and the majority of kidney patients do not reach that point. If anything, turn your anger into action to keep that from happening.

When you know more, please come back and let us know so that we can share our own adventures.

Good luck,

lowraind

P.S. I love your picture.

[MrsP70 in reply to lowraind]

Thankyou 😀I am reading everything I can now about diet and making notes but it sounds to me that it is going to be more about self help and reading forums like this that is going to help most .

[lowraind in reply to MrsP70]

That is what I and many others have found!

[Hidden in reply to MrsP70]

If DaVita Dialysis is in your market, ask about the 2-hour FREE "Kidney Smart" seminar. It will be conducted by an experienced renal nurse, and you'll also leave with an armload of useful information. I've found it so useful that I have repeated it twice!

[treesarecoo]

Fortunately for me I am a nutritionist and am very passionate about health and researching natural health and prevention for disease. When I found out about my CKD four years ago, I did hundreds of hours of research about how to preserve kidney function. I learned so much and have managed to stay in stage 1 for four years (so far!). For the last 20 years I have always maintained and tried to teach people that you have to become your own doctor if you want to save your life. Learn all you can. I only use my doctor for blood and urine tests (since I don't have a lab in my home!) but doctors could care less about nutrition and lifestyle and don't know much about it anyway. Nutrition is the KEY (along with exercise, using natural products, attitude and so on). Doctors aren't interested in "healing" in my opinion; they only know how to hand out drugs. I'm not on any drugs at all and would only take one if I was dying. Learn all you can about your condition and do all that you can to save yourself because no one else will.

[Redear in reply to treesarecoo]

Thanks for your post. From your research, what are the main points on preserving kidney function? I have diminished function 60-94 that fluctuates but not CKD because my numbers a good. I am 53. I hear so much on here about Drs not caring about diet. Baffles me. My GP is really all about it. High Water intake, low sodium, no caffeine no processed sugar, sensible diet after that. Anyway, interested in your thoughts.

[treesarecoo in reply to Redear]

There's a lot to know and it would take pages and pages of info to give you all that I've learned over the past 4 years. I do have a website and youtube channel where I do give quite a bit of info if you're interested. Here's a link to my youtube channel: youtube.com/user/TCFNicole/...

Here's a link to my website :

nicolesnaturals.blog/

[Redear in reply to treesarecoo]

Perfect! Thanks!

[Hidden]

I'm sorry this happened to you, but, sadly, this happens so often - a lack of patient education. My husband was on dialysis, and the lack of information we received for years was my inspiration to go back to university to get a BA in Health Education and be an advocate with the NKF. I am coming across CKD and ESRD patients and their care partners on a regular basis that tell me they are not being educated about the modalities available or that home dialysis is even an option and so many other things. It is very sad. I encourage you to research from reputable sources and discuss the information you find and the questions you have with your healthcare providers. They need to keep you informed so you can make the best decisions together. Welcome to the group, and good luck!

[Buffy-1]

Hi Mrs P. I am 72 years old and found out late Nov that I was 3a CKD. I was shocked. My doctor gave me nothing other than we will watch it and may need to change bp meds. I found this site and am doing my research. I requested to see a dietician. She was not a renal dietician, but gave me some good advice. My Gfr was 54 and at last blood work am now 60. I also lowered my creatine. All my other blood work, normal. I stopped eating beef and pork and no processed meats. I requested for my last blood tests to do every test that was needed. I had 20 different testa with some tests having multiple results in them. Everything was good. So I am continuing on this path until I may need to do more. This was a big start in the right direction, and a wake up call. Good luck, do your research.

[Barbee44]

Same here. My nephrologist, who I had to beg to see, explained that some people never go beyond stage 3 so they don't say much, but they watch the blood tests for changes. It's shocking to hear you have such a horrible disease and no one seems to care. At first I changed my diet drastically, and worried but the more I read, the more I see that elderly people's kidneys do slow down and often don't go into the danger zone. So until my numbers start going down I'm going to enjoy life, eat pretty much what I want and not worry about it. I have cut way down on salt and I drink more water. Other than that, I'm just watching the numbers.