44 y/o 3b kidney disease

[Tanesha29]

You give me hope. I was just diagnosed. Can you please tell me how you did it. I'm 3b right now. I was a little discouraged with the diagnosis.

[orangecity41 NKF Ambassador]

I followed prescribed CKD diet and it has helped me with my CKD levels.

[RAat13]

Can I ask why the discouragement?

[Tanesha29 in reply to RAat13]

I was so discouraged by the diagnosis because I have young children and a husband. My mind went to the worse for a minute.

[RAat13 in reply to Tanesha29]

I hear that, I'm the same. I first got told my kidneys were struggling during my first pregnancy, was discharged after 5 years as they were "stable" always had high blood pressure though and at every appointment for other conditions they weren't bothered it was so high, roll on 5 uears later to 2020 and pregnant with my 2nd they then tell me they are declining fast and I should've planned it with them... how am I supposed to plan with the renal team when I was discharged, admitted at 28 weeks, she was born at 31 weeks, she's fine but my kidneys never recovered, I'm now in the process of having the tests/scans before I go on the transplant list!

Have you got a bp machine at home, if not invest in one, I check mine morning and evening and I upload my results onto the Patients Know Best, if you don't have that ask your renal team to set you up.

Keep hydrated and I find less potassium is helpful and just smarter food and drink choices.

All the best x

[Gunnison5 in reply to RAat13]

I wish you the very best.

[Pepperthedog]

Hi Tanesha - I remember feeling devastated when I got a PKD 3a diagnosis, as I had a young child and my mum was on dialysis with the same syndrome. I asked the consultant, "What can I do about it?", and he told me the best things I could do at this stage were to 1) keep my blood pressure down, with medication if necessary; 2) eat as little salt as possible; and 3) exercise regularly. 40-plus years later, I've avoided dialysis so far. It won't necessarily work for everyone - it depends on the underlying problem - but can't hurt. Bear in mind that virtually all fresh meat, poultry and sometimes even fish have added salt to keep them moist, plump and add weight to increase profit; sometimes it's possible for you to leach out some salt, and you don't want to eat too much protein anyway. Good kidney-friendly diets can be found from agencies like Kidney Care UK; but you can also ask to see the hospital dietician for a personalised plan that takes your lifestyle into account. Good luck!

[TableTennisMama in reply to Pepperthedog]

Thank you for your story of survival all these years. My greatest challenge is salt. I crave it. And I reason that we need salt, or at least a certain amount of salt. But there’s no arguing with success like yours!

Do you know if there actual studies showing that salt intake is hard on kidneys?

[Pepperthedog in reply to TableTennisMama]

There is a lot of well-documented research evidence you can find on the Internet or from your medical team that salt can be toxic for damaged kidneys. This is why my UK nephrologists, and my mother's kidney team in Canada, have all insisted that lowering salt is the single best thing we could do to preserve kidney function at an early stage. I've found that the less salt I eat, the less I miss it - our national diet educates our bodies to expect it. My weakness is sugar, and that's been much more difficult for me to reduce!

[Darlenia in reply to TableTennisMama]

Both extremes - too much salt and too little salt - can damage your kidneys. Your labs hold lots of answers. If the data indicates your sodium is in the normal range, then you're very likely fine with what you're ingesting. However, if one is on meds of any sort, that can also influence matters. With your labs in hand, it's best to consult with your doctor who knows your entire profile. This is a study on how too much salt intake as well as too low salt intake are hard on kidneys: sciencedirect.com/science/a...

[TableTennisMama in reply to Darlenia]

thank you for the link to the studies. As you point out it is not cut and dried. Extremes on both ends can be problematic. Good to know.

[Tanesha29 in reply to Darlenia]

thank you

[Tanesha29 in reply to Darlenia]

Thank you so much

[Tanesha29 in reply to Pepperthedog]

Thank you for your story of hope!!

[Pitva in reply to Pepperthedog]

Would you be able to share your daily meal choices that helped you keep CKD in control. This will help millions out there. Were you following any of the low protein, low phosphorous, low potassium diets.

[Pepperthedog in reply to Pitva]

Hi Pitva, when I first got the PKD diagnosis in my late 30s, medical advice was to reduce dietary salt, lose weight (despite not being overweight) and take BP medication - good advice, as it turned out. Only later was I was told to reduce potassium too. As CKD/PKD advances, nutrition becomes more important, and there are lots of good online sources with the nutrient content of hundreds of foods to guide you; most packaged foods list their salt content, but not protein, potassium and phosphorus. You can also look up how much protein per day is allowed for your weight and CKD stage - in my case, 37 grams.

Soaking meat and poultry in water before cooking can leach out some of the salt, often added by producers to increase flavour but also to add weight (and profits!). I eat a few ready meals, and look for those with the lowest salt: there are also 2-3 online suppliers who do low-salt versions I haven't yet tried. Reducing sugar is also very important.

I gave up meat years ago but eat small amounts of chicken or fish a couple of times a week, a few low-potassium nuts (walnuts, pecans & macadamias), and occasionally a little cheese; lots of veg, and some fruits recommended for CKD, e.g. blueberries, apples - definitely not e.g. bananas. Finally, daily exercise - even if only walking - is essential.

Having an early diagnosis of PKD definitely helped maintain my kidney function and keep my BP down - the single most important factor in progression. (My mother, who was first diagnosed in her late 50s, started dialysis at 60.) Good luck with your quest.

[WildIris]

It's good you were diagnosed at stage 3B instead of later. I first got my doc's attention with an eGfr in the 20s, but retesting eventually put me at stage 3B.

I had several other chronic conditions and was overweight and completely fed up so immediately went on a strict vegan diet, that I thoroughly enjoy now. Giving up sugar and diet drinks was hard, but only for about 5 days. Long story short, I slowly lost the weight, and my various chronic conditions slowly disappeared, and my eGfr has been above 70, and was 65 on my latest test, which is stage 2, I think, but I don't worry about my health anymore, because I know I'm doing all I can (and we all die-I'm comfortable about that, though I wasn't at your age)

Best wishes to you.

[Tanesha29 in reply to WildIris]

Can you tell me more about your began journey

[Tanesha29 in reply to WildIris]

vegan journey what are you eating how many meals a day.

[TudorQueen]

Hi Tanesha29, Keep faith. Drink lots of water. Avoid Tomatoes and Avocado, replace salt with herbs. Look at Pepperdog reply. Also, Internet has 3A and B diets. They have helped me increase from 3b to 2 in 4 months. Also, water before blood test helps. Best of luck

[Tanesha29 in reply to TudorQueen]

Thank you

[Justlivingonveggies]

hi I want you to know you’re not alone, I too was diagnosed with 3b 8 years ago and and I was in total shock. Mine was brought on by my use of ibuprofen, just regular use over years of suffering from arthritis pain and my job .

Over the years I ve improved by diet and drinking lots of water. I now only see my kidney doctor once a year and I am now a 2b.

No NSAIDS, low and no phosphorus ( lunchmeats) low sodium, low potassium, low red meats, no or low pop like Pepsi/coke it has phosphorus.

I’m still working on it , I still have some behaviors to improve, weight and walking more.

😊

[Blackknight1989]

I have been stage 4 eGFR 16-19 since 1996. If your disease progression has halted and your eGFR is no longer decreasing over time, it is possible to love a normal life. In 1996 post AKI and facing stage 4 eGFR 16-19 I was scared. Last month eGFR was 16. In 1996 when I was 29 facing CKD stage 4 eGFR at 16/17 I was scared to death. Now at age 59 with eGFR at 16, I just hate the quarterly doctors appts….lol…my best to you…oh my point is just that if your eGFR is stable (no longer decreasing due to disease) with some relatively easy and not too severe modifications to diet (plus 3/4 BIG ITEMS to avoid consuming), a long, relatively normal life is not only possible but probable.