What are things I can do to live well with 3b kidney disease?

I also use a slotted soup spoon for soups like vegetable and chicken noodle. I get to eat most of the solid contact leaving most of the sodium and potassium liquid behind.

There will be a multi-day education forum presented by the American Kidney Fund kidneyfund.org June 6-10. This will be a virtual conference called Kidney Action Week. There are several different topics, with most of them repeated. I have signed up, because, well, you can just never have too much information, right!? Go to the link above to register.

No, I am not associated with them, but hope many of us here will take a look to see if this may be a great chance to learn more about kidney disease!
Ginger

My kidneys were damaged because of NSAID’s, unknown to me, I was prescribed Neproxin(sic) that did the damage. My 3rd stage CKD quickly got out of hand but was able to research a kidney friendly diet. As my kidneys deteriorated because of a newly found blood problem (Kappa IgM MGUS) I ended up only 10 points from dialysis. My Oncologist/Hematologist worked on my blood, my diet covered many kidney friendly choices. My kidneys have recovered a little but my blood issue is still a major problem. Hope things get better for you.

All of us with CKD 3a-3b seem to be having a similar experience. Our physicians aren't very concerned and often
tell us nothing very helpful. Sometimes, they tell us nothing at all. As patients, we become our own physicians.
I don't understand this situation and have commented on it previously. We should be responsible individuals, but we require the appropriate help and information. Can someone explain what's going on? If you don't want to
help, why become a nephrologist? Very frustrating. Very puzzling. I wish us all the best. Don't know what else
to say. Makes me feel a bit better to know others have had same experiences. Is this state of medicine in America
today? And if it is, why?

I am 70, dx with MCD in2019 during a routine annual exam. I consider myself in great health with the exception of osteoarthritis. I recently learned that my eGFR is 59 which put me in the category of 3a CKD. I asked my nephrologist what could I do to improve or maintain my current status. He suggested weight control, moderate exercise and moderate sugars and salt. I have also learned that stress is a factor so I try to meditate often to decrease stress. YouTube is a great place to learn meditation techniques. Stay positive and much success.

Ya know what changed the medical profession, when doctors became specialist. I’m 78 and I miss the days when old fashioned doctors had to know everything. I’ll give you a prime example. In 1944 I was 6 months old when my mother became concerned about me losing weight, throwing up and having diarrhea. She took me to our local hospital where two doctors told my mother to take me home that I was dying from a condition called “Waste of Life”. My grandfather was Native American and had told my mother that if she had a child White man’s doctors couldn’t help, to talk it to a medicine man. She did just that and I was Pow-wowed and given a spiritual healing. He knew what was wrong, gave my mother some herbs to drink like tea and it would get into her breast milk and heal me. She did and here I am 77 years later. Why did I tell you that story, here’s the answer.

Zip 30 years and I’m at my old fashion doctor’s office. I had been doing research for my book of older medical names compared to more modern names. I asked my doctor had he ever heard of the medical condition called “Waste of Life”? He paused what he was doing, looked up towards the ceiling of his office and searched his memory. It was an old medical term that often killed young babies and toddlers and it was what those two doctors said I was dying from. Yes my doctor answered, he had had a few cases himself when he first started his practice. He said that it was an immune system problem where the child’s bowel couldn’t absorb enough nutrition to keep it alive. In today’s medical terminology it’s called “Failure to Thrive” and is still killing babies in 2022. I miss my old doctor, he had to know everything. Do you think any specialist could answer my question, they probably never heard of it. Any person that reads my replies knows how sickly I’ve been all my life. I have or had so many rare or very rare conditions, I literally tell each new doctor I get to throw away their textbook knowledge because I’m not in them since I’m a “Freak of Nature”. I’ve been misdiagnosed to many times, several nearly caused my death. So it was my body against their text books, and I became my own specialist!!!

As I was reading your first paragraph I was thinking, "I wonder if she meant 'Failure to Thrive' ". What a terrible term to call a disease "Waste of Life". I think your point about the good old fashioned docs is well taken; my primary care is, in general, a rockstar. He did not, however, mention that my kidney function had been in decline until he was "alerted" when my laboratory flagged my GFR at 59. It fluctuates from 53-64 ish but had that one point (from 60 to 59) not occurred, I would not have known about my declining kidney function. I believe whole heartedly that this has to change. Declining kidney function needs to flagged and addressed far earlier. This is a fight I wish I had the energy to pursue.

Nancy, I believe normal creatinine is between .7 or so and 1.2 or so. When I had my crisis my creatinine was almost 4.9, which was considered acute kidney failure. Happily after my crisis was dealt with, it gradually went back down to 1.7 or so, but I am told not to expect it to get back down to normal. My eGFR has been fluctuating in the 44-49 range. Regarding seasoning on food, I almost never add salt, but use a lot of fresh ground pepper. And a lot of fresh garlic.

I started my research in 1860, that’s 162 years ago. Many of the diseases back then still exist today except with a new name. You were probably vaccinated for many of them as a child entering school age. One of the diseases is even mentioned in the Bible and still exist today. Ever hear of Leprosy, a disease that deformed people and was very contagious. You can get it today by handling an Armadillo infected with it. In poor countries, especially Africa, people infected with it go untreated many times. I just read a story here in the United States where a baby died from Failure to Thrive. Most times hospital will test babies for the condition and can treat them. This baby that died was born at home and I guess was never tested. It usually kills by the age of 6 months, the age I was saved by my medicine man/Shaman and my mother because she had lost another baby the year before.

Hi Paul,

Thanks so much for your reply. Your ranges are the same as mine but unfortunately you had a crisis point. That must have been very scary for you. Was there any reason for the drop??? I won't get new blood work until early September so I just have to wait. Paul, I am having a real problem with snacking at night. I'm up quite late because my days are boring since I don't have a car anymore (that sucks). Any suggestions? I have found baby cucumbers that are quite good, low salt popcorn but I can't think of much more. I know apples are good for me, what about oranges? Of course I crave junk since I can't have too much re fat, sugar. Some days I go crazy and then get back on track the next day and try to stay top of it. I just found cabbage so I simply saut (can't remember how to spell it) with onions and it was somewhat tasty. If I had had some hamburg I could have just added a bit to it. I limit my red meat to just hamburg, lean, and only about 2 times a week. For fish I eat flounder. I guess organic is the way to go so I am trying to stick with more veggies. I feel like I'm being cautious enough. I don't think I'm even close to the maximum of 2000 mgs of salt. It's not easy and I can't use much garlic (which I love) because of a hernia. It's so nice to get old, the golden years. Really??? I did check my numbers on my Lahey chart: Sodium - 141, Potassium 3.5 (I take supplements because my potassium runs low), Bun 21?, Creatinine 1.1, protein 6.9, GFR 49. I need to become more familiar with the Creatinine and BUN. I'll stop here because I don't want to put to sleep. : )