What to do if EGFR is 19?

@kamama94 I have grown to like almond milk. I do limit my dairy to greek yogurt a few times a week. Never have been a big cheese consumer. Label watching is just part of what we do as kidney patients, now!

Funny that probably due to taking furosemide, I am on potassium supplements. In fact, my medical team gave me the go-ahead to eat a banana a few times a week, eating oranges/drinking orange juice, and eating healthily prepared potatoes without leaching them! Wow! I went for over 10 years not eating these goodies! First thing I did was buy a small bottle of organic orange juice and sat in the car savoring it!
Ginger

My creatinine started rising in 2014. eGFR steadily getting worse. I have PKD and nephrogenic diabetes insipidus. I'm not sure if my way of eating helped me make it this far. eGFR is 26 but fluctuates. I do a time-restricted eating plan. Eat for an 8-hour period and fast for 16 hours. Just water during the fasting time. My diet is mostly vegetarian, with lots of beans, vegetables, fruit, and some sweets. Thankfully, I have an appointment at Mayo next month with a PKD specialist. My Neph locally, tells me it's all just numbers, I'll live to 100, don't worry..etc. I need more information than that. Hopefully, Drs at Mayo will provide a clear picture of what lies ahead and how to manage theses diseases.

@kamama94 I have grown to like almond milk. I do limit my dairy to greek yogurt a few times a week. Never have been a big cheese consumer. Label watching is just part of what we do as kidney patients, now!

Funny that probably due to taking furosemide, I am on potassium supplements. In fact, my medical team gave me the go-ahead to eat a banana a few times a week, eating oranges/drinking orange juice, and eating healthily prepared potatoes without leaching them! Wow! I went for over 10 years not eating these goodies! First thing I did was buy a small bottle of organic orange juice and sat in the car savoring it!
Ginger

@gingerw
I thought oranges and orange juice were no no's for CKD because of high potassium levels. I believe those on dialysis are allowed many food choices that we could only dream about such as meat or dairy products. Whenever I go to Mayo, I sneak in a latte with oat milk at Starbucks as that is incorporated at the Phoenix Mayo site. Also interesting is that this thread talks about food and diet, which is quite important, and not the equal importance of exercise as it relates to eGFR. Last thing, Ginger, as many of us have followed your journey, but how are you feeling phyically as a result of your dialysis? Some of us are in late stage 3B or 4 and are desperate that we go no farther.

@collegeprof I actually have low potassium! My oncologist feels it is a result of the 80mg furosemide twice a day, depleting my system. We discovered a slight heart murmur, and after starting prescription potassium supplements, and incorporating some potassium rich foods into my diet, the murmur has gone away. I have never been a big fan of dairy products [except an ice cream cone once in a while!], but stayed away from bananas and oranges for over a decade. By golly, that first sip of hand squeezed orange juice was like nectar to me!

In this season, as it is warming up, and the weeds have taken over, I am getting out right at sunrise to "pick a bucket or spend an hour" doing some yard work. Then come inside to have a cup of coffee, some nutrition, and hook up to dialysis. This schedule is working for me right now.

As to how I feel physically. It took me a bit longer to feel better once I started dialysis, seeing that I am also an active cancer patient. Probably 3-4 months for me, where others feel better within weeks. My energy is better, the blood cancer numbers are better. I believe that is due to the dialysis cleaning my blood/system, and allowing the chemo medications to work better. It is an adjustment that I take in small steps. No, I won't be going out to do a marathon run, but that was never on my plate anyway.

You're absolutely right. Diet and exercise play vital parts in our health journey. We are each unique people, and have individual needs. Being in this community, we can share what has worked [or not!] for us, and others learn from us. I am grateful.
Ginger

@collegeprof I actually have low potassium! My oncologist feels it is a result of the 80mg furosemide twice a day, depleting my system. We discovered a slight heart murmur, and after starting prescription potassium supplements, and incorporating some potassium rich foods into my diet, the murmur has gone away. I have never been a big fan of dairy products [except an ice cream cone once in a while!], but stayed away from bananas and oranges for over a decade. By golly, that first sip of hand squeezed orange juice was like nectar to me!

In this season, as it is warming up, and the weeds have taken over, I am getting out right at sunrise to "pick a bucket or spend an hour" doing some yard work. Then come inside to have a cup of coffee, some nutrition, and hook up to dialysis. This schedule is working for me right now.

As to how I feel physically. It took me a bit longer to feel better once I started dialysis, seeing that I am also an active cancer patient. Probably 3-4 months for me, where others feel better within weeks. My energy is better, the blood cancer numbers are better. I believe that is due to the dialysis cleaning my blood/system, and allowing the chemo medications to work better. It is an adjustment that I take in small steps. No, I won't be going out to do a marathon run, but that was never on my plate anyway.

You're absolutely right. Diet and exercise play vital parts in our health journey. We are each unique people, and have individual needs. Being in this community, we can share what has worked [or not!] for us, and others learn from us. I am grateful.
Ginger

My husbands neph has been sort of doing the same thing saying that numbers are just that. He has not said a lot about diet. Seems like he always said things were good because most of the things measured in the metabolic panel were good and urinalysis always good. Stage 3B in spite of egfr in the 20’s and creatinine 3.3. Then at the last appointment we saw the PA and he wrote up that he needed to go to kidney consulting classes and be preparing for dialysis. Still waiting for some comments from the doctor.

It is I who is grateful. You have gone through so much for so many years and have provided this forum with excellent CKD information. You have always had an upbeat attitude despite your many serious maladies. Thank you for more information that many of us will remember.

Yes, my Neph never talks about diet. I asked him about drinking water through the night, no opinion. I like to drink sips of water during the night, maybe I feel like it's keeping me hydrated. Sadly, I learn very little from my Neph. Your husband's creatinine seems high. Mine is 1.9 and I'm considered 4th stage. Difference between males and females? Weight? Age? I'm so looking forward to my appointment at Mayo. Although, I might get bad news. Yet to be seen.

Are you drinking at least 64 ounces of water daily? Yes, I know u pee a lot but it is necessary. Do not drink any pops. Or alcohol. U probably know which foods NOT to eat. Go Vegan, might help.