Just diagnosed with stage four kidney disease: Need encouragement

Hello rene123
I am a kidney transplant recipient and in early 70s . Having said that my Kidney function started detiorating in from mid 50s s the gfr was around 40s & went drastically down due to an error made by the prescriber (trying to be polite to the medical profession) basically the manufacturer of the drug clearly stated that if the creatinine clearance is below 30 DO NOT take this medicine... Then on I became a strict vegetarian and that helped me big time as the GFR decline slowed down... reason is the Veg diet does not damage the kidney nephrons (act as filters) and you can enhance the longevity of the Kidney.. I manage to get upto 65 years before I went for a transplant.. Kidney function failure due to genetics .. in my case I cannot prove but most likely it came from my grandmothers side.... I would avoid dialysis as far as possible.. find a donor & also get your name on the UNOS list... In my case I was fortunate that my wife matched. Good Luck.. I would keep a tab on potassium intake as early issues start with Hyperkalemia ( where kidney cannot clear potassium)...

Not sure what your eGFR is but has to be under 20 to get on transplant list. As a recipient my advice is:
Drink tons of water, low potassium, low phosphate (nothing from a deli) and no OTC meds of any kind.
No brown drinks (coke, Pepsi etc). These all helped me go from eGFR of 8 to 15 before I got my transplant. Good Luck.

Hi,
I have stage 3 kidney disease and I used to cringe before every visit to my kidney specialist. Dr Soni used to give me such news as your kidney functions are low and you need to drink water a lot and eat veggies veggies veggies and dont have more protein than 3 or 4 ounces at any time. Pottassium and phosphorus are no nos and he gave me a list of fruits and meats not to eat. I went to see a nutritionist for this and she gave me further instructions on what not to eat and what I can eat safely so as not to make my kidney disease any worse than it is. I am deathly afraid of dialysis I just do not want to get to that point and Im at stage 3. You being stage 4 are too close for comfort to the dialysis threat for me so I would see a nutritionist right away and definitely do what dr Soni says and only eat good things for your kidneys like water and certain veggies and berries etc.. and not hardly any protein from animals . please take this advice to heart as I dont want to see anyone have to do dialysis it wrecks everything .

oh , by the way my last visit to dr Soni was so great . After ive been on Ozempic and my weight is down to 160 he said my kidney function doubled and its almost like a normal persons.:-)

Wow hats off for braving GFR level of 8, btw: anytime GFR is 10 & below "AKF" can occur and one may not survive. (AKF = acute kidney failure) .. I am glad all worked out. Best Wishes

I think what the folks are saying here is very helpful. I would add that your daughter needs to be aware of this, it will be a shock to her as well. As mothers we are used to being strong for our kids but sometimes we need their strength and support too. Hugs to you.

Thx. They admitted me with Renal Failure and got me on the ‘list’ very quickly. 13 months and got a kidney and eGFR up to 44 😁

There is some hope. I am 67, was diagnosed with Stage 4 in 2023. I was told a couple weeks ago that my initial eGFR at the hospital (was in 4 days), was low enough, they considered dialysis at that point. They held off, treating me with antibiotics and saline solution. My eGFR was below 30 for several months, I was tired, short of breath, besides contracting Covid a 2nd time and the Flu. I saw from my labs I was anemic, so I found foods high in iron (not supplements). That change caused some improvement. I wasn't able to walk very long distances, but made an effort to increase my walking a little every other day. I did a lot of research on my own on the internet from sites like Mayo, Cleveland Clinic, etc. Read articles from Nat'l Kidney Foundation, DaVita, etc. My diet was close to what was needed, so adjustment for me was not difficult. We dined out less often. When we did, ordered food with NO SALT, when possible. If you investigate restaurants (the chains), you'll find sodium levels are through the roof - some I no longer dine at. As others have said, watch sodium, potassium, phosphates (added to most foods-read the ingredients) and protein. I met with a renal dietician, she told me to keep portions of meat to 3-4 ounces (about the size of your fist), mostly chicken and fish. I can have red meat - pork or beef, but I keep it to once a month. Turkey is good if you can find it low in sodium. Berries (raspberries, strawberries, blackberries, blueberries) are very good - low in sugar and those minerals. Cherries are good. Avoid or limit bananas, oranges. Vegetables, I eat salad everyday with bell peppers, small amount of avocado (quarter of it), cucumber, goat cheese. Also eat cabbage, broccoli, asparagus & cauliflower. My breakfast usually includes low sugar granola (oats), chia seeds (important non-meat protein source) and ground flax seed (some say this is bad-guess if you are prone to kidney stones). I use Rice milk but also Oat Milk or Almond Milk are good. Avoid the colas, drink water, about 2 liters a day. Get exercise, but NOT too much, walk moderate pace roughly 2 miles a day. Or, I go golfing a couple times a week. Quinoa and rice are other good foods. Quinoa is supposed to contain the essential amino acids our bodies need. Beans, lentils, nuts can be good too. Keep in mind, this is what I EAT, a nutritionist should work with you for your needs. Finally, my eGFR has recovered. It is now around 36-38. I'm no longer Stage 4, but now at Stage 3b. My nephrologist, at my last appointment, said I am at low risk for renal failure in the next 12 months. Their projection has me at moderate risk in the next 5 years. They don't know what caused my issue, they have several theories. They have me taking blood pressure meds, moderate to high blood pressure can cause kidney damage. Mine is low enough now, they have me taking a half dose and would even consider removing me from the meds, if it doesn't climb just a bit higher. Bottom line: Everyone is different, it's hard to predict outcomes. If everything were the same for us, I would say there is a good chance you'll see some improvement with diet change, water intake, good BP and moderate exercise. Wishing you well in your journey.

Hi I’ve been Stage 4 for at least 18 months now. Purportedly from Vitamin C toxicity, but I have my suspicions about that. I was 6 months out from Cisplatin chemotherapy when the symptoms appeared. Regardless, does the cause matter if it can’t be remedied. Went through 3 months of dialysis, wouldn’t recommend that, I was ready to face the consequences without it but the excellent nephrology team at Mayo Phoenix convinced me to try it on a temporary basis. eGFR improved from < 8 to 20+ and I stopped dialysis 16 months ago. I’ve been staying steady at 20 or so since then. I follow the diet for low oxalates, potassium etc closely. Drink lots of water. I’m able to enjoy life, a decrease in activity from the pre-cancer days but that’s to be expected at 73. I do have spells where I’m exhausted and feel somewhat ill. I know from past experience, I had HepC, to slow way down and rest till I feel better. DO NOT try to power through it. Usually lasts a week or two then I’m re-energized.
I qualified for the transplant list, I’ll be on active list next month, hopefully after two years of being cancer free. Frankly at my age, I lean toward allowing the kidney, if available, to go to a younger person. But they may change if and when I’m faced with the decision to die. I’m on bonus time already and feel fortunate for that.

I'm so sorry for all you have gone through and are still going through. I can't imagine how exhausting it must be.
My brain would want to know the cause because somehow it may help make some sense of it.
I'm happy for you to be on the transplant list. At least that way you are given somewhat of a choice in a crappy situation.
I don't know how old you are but age is just a number, it doesn't make your life less important.
I hope and pray that you will have a positive outcome. Take Care