Going private

[Shane80]

Has anyone gone private just to double check everything … I am currently at 8% kidney function and I find that my nurses which I visit aren’t very helpful and I hardly see the nephrologist. I feel like I’m not supported enough , all they keep asking me is if I’m ready to have my PD Catheter placed in my stomach . It’s strange because all my blood work comes back mainly at normal range but my kidney function just keeps dropping .

[RhenDutchess123]

If you are at 8% GFR....you need to make a decision on what treatment you want for your kidney failure....and begin. Your labs may be in somewhat normal ...but that can change overnight....

How are you feeling ? Please dont wait too long...You may need to find another Nephologist or become more vocal about your questions with them..

8 % GFR is dangerously low..

[Bassetmommer NKF Ambassador]

Curious Shane as to what is normal blood work if you are at 8%. What is your creatinine? How about your hemoglobin? Somethings are impacted by that low function and should be showing up in the labs. If your protein and potassium and phosphorus are all normal... I would be certainly question the labs work on the EGFR.

[Okiksaints1955]

Hi Shane,

You cannot have 8% kidney function and yet all tests are normal. And there is no value continuing with your present medical team - they will just justify their findings to avoid probable malpractice.

Go now to a private Nephrologist. What will you need your money for if your health is the risk.

Bring all the results of your tests ,that will be his baseline. List down all your questions and doubts - a good Nephrologist is your best source of information.

I have been mis-diagnosed early in my CKD journey but I never stopped looking for the right Nephrologist. And my kidney functionality lasted +30 years.

Good luck and be well.

[Hawaii808]

Last July my dad was diagnosed with end stage with a eGFR of 7... He did not want to do any type of PD or dialysis (he's 80) so his doctor told him if he can increase his eGRF and show improvement, he would let him hold off... his labs as of yesterday, he has a eGFR of 23 now. With major diet changes, the most recent (2 months) of being plant based has been the game changer!

[anbess in reply to Hawaii808]

Hello, just curious, do you mind giving me little more info about his diet? Did you follow Lee Hull's method? My dad is 83 and his EGFR went down from 22 last year to now 12. We are going to be schedulng a catheter surgery to begin dialysis. We have been trying with his diet (trying to eat plant based as possible and limiting animal protein and overall protein amount) however, his numbers keep sliding. I'm curious how you got his number to 23. Thank you!

[Hawaii808 in reply to anbess]

Sure! I got his lab work and looked up what the problem areas were for his Sodium, Potassium, Phosphorus... But I really just made sure any food I bought didn't have anything "Phos" in the ingredient. Made sure the sodium on the nutrition label was 10% per serving (give or take a percent or 2 if it went over) and chose low potassium ingredients. I started logging all meals I cook just so I could get an idea of the totals for each meal. He dealt with a lot of itchiness so once we found meals that didnt make him itchy, I kept those in rotation as go to meals. I cut out beef/pork completely for him and tried to buy organic whenever possible. Every meal I gave him either sliced apples, strawberries, blueberries, black berries, pineapple, or cherries. Every morning he eats either oatmeal with cinnamon and some honey and a little almond milk, 1 piece of toast or half a bagel, and some fruit. This was from July 2020 - April 2021. During that time he still ate chicken and fish. His egfr would get better by 1-2 numbers a month. Then in May he decided he wanted to try to eat plant based/Vegan... his first month he noticed his joint hurt less. His egfr increased 2 points. He had also been losing weight since July 2020 just due to the strict diet. His last lab tests he got last week showed his egfr increased by 6! That was the biggest improvement so far. His nephrologist even said he gained a few pounds since he last saw him. Due to him being itchy after some foods (I'd write down anything we thought caused this so I wouldnt cook it again) I asked his nephrologist if he could be prescribed phosphorus binders (which helped a lot but didnt really make it stop happening) so I researched more and found another medication called gabapentin, which helped his itching at night and helped him get what he calls "the best sleep of his life" lol. I live in Hawaii so we have zero board certified renal dieticians, and even the dieticians I did find and use for him were not really of any help to me. I had to look up and research, take free kidney web classes from the kidney foundation. google is still my best friend, and Dadvice and Jen Hernandez facebook group and IG are what helped me a ton. I got more useful info from asking others online then the medical professionals. Her website is plantpoweredkidneys.com her website, Facebook, and IG are really good. Oh and that name you mentioned if I followed their plan, I didn't. I also would take the meals he used to like and try to remake them but "kidney friendly" oh and I found a ton of good recipes on Pintrest looking up "renal diet recipes" The app I would log his food with is called cronometer. Sorry for rambling, I just get excited to share what I have had to learn because of the lack of resources out there. I hope your dad's numbers start to increase in the right direction! My dad is diabetic, gets gout and now this kidney disease. We just lost my mom in Jan of last year and a few months later is when we found out about him having kidney disease. I think it was brought on a lot sooner than it probably would have shown up due to him grieving and being depressed due to the loss of my mom. I make him go out to the beach and fishing with me and my daughter weekly and just keep him active.

[anbess in reply to Hawaii808]

This is so helpful! Thank you. I'm going to try again with your tips. How much protein in grams did you give him for the day ? We have had my dad cut out beef and pork as well but he complains a lot about his food so I think there might be cheating going on (I don't live with him and my mom.) There was a good month where he really didn't have any animal protein but his egfr went down by 1 point the following month. I will also try to join some of the facebook groups you've mentioned as I would love to learn from others who are trying with similar diets. My dad also had really bad gout but now he is now on medication (allopurinol) to control that. He also has diabetes but takes meds for that and it is somewhat under control. Has your dad been feeling better with numbers getting better? My dad is also anemic and gets mostly eco shots to boost his hemoglobin numbers. Thank you!

[Hawaii808 in reply to anbess]

your dad sounds like mine lol... my dad was on the same gout meds but his kidney dr switched him to febuxostat. I have read that they think its better on the kidneys... not sure how true that is. I would say his protein intake is about 50g per day... and about 64oz of water. He does drink decaf coffee every day.

[Hawaii808 in reply to anbess]

Also, just wanted to mention since I had no idea it even existed, that there are 2 other forms of "dialysis" Peritoneal dialysis and Hemo diaysis (both can be done at home)