quickly lowering EGFR?

[portlandpam]

I have a family history of kidney diseases losing my father, grandmother, and aunt or kidney disease an older sister had a kidney transplant years ago and now my next older sister and I have kidneys whose EGFR both went from the 43 quickly through the 30 ( within a year) and Todays blood tests was EGFR 29. Creatinine 1.74

I control my blood pressure, eat no red meat and limit sodium by avoiding processed foods and reading all sodium labels ! I exercise regularly and weigh 121 at 5’ft 5 “

So now at age 74 it seems to all be imploding. , the doctors don’t seem to be overly concerned but it is hard to imagine looking at dialysis so soon? ! Are there any suggestions or others who have experienced rapid declines in gfr and increases in creatinine with no apparent reason but perhaps age? I am thinking of trying co q 10 , becoming a vegetarian ,drinking hydrogen water having read about ways to slow this all down! Suggestions ?? have others had this experience?

[Blackknight1989]

I hate folks who post with questions and nobody answers. I have no experience with ERSD, only CKD/AKI and while I did lose all kidney function with an eGFR in hospital of 6 and did nearly die, yet didn’t but still spent 7 months in hospital, I understand the urgency of your situation. I most likely survived because I was 29 when diagnosed with CKD. It caused nearly 50 LBS of fluid retention in my case. I went to the ER annd ann ER doc drained anll 50 lbs off me in a week. That led to metabolic acidosis resulting in multiple organ system failure. Doctors fought to keep me off dialysis. But in your case your (you may not want to hear this and trust me I really don’t want to be “that guy” by pointing it out, but as an outsider who has been stage 4 since age 29 post CKD diagnosis and 6 month hospital for subsequent AKI two months later, I expect my route to be similar as I expect my damaged kidneys to fail prior to the end of my life. I can’t have an eGFR of 13 or 17 or even 21 (my last 3 blood tests) and expect my damaged kidneys to last a lifetime. UNDAMAGED, they were created to last over a lifetime but with stage 4 CKD since age 29 I hope to get to age 74 before I need what you are facing. We age and our bodies decline, thus our individual organs will decline as well. If those organs suffer severe non-reverseable damage it makes sense to me that they potentially fail prior to a “normal lifespan age” of a healthy person.

I of course don’t know and I’m not a doctor though I do know a lot about CKD etc, perhaps more than most doctors, just goes with the territory of diagnosis at age 29, near death and a 7 month hospital stay in 1996 and the subsequent near 30 years since. However, it is an issue we all will face and more important to me every day as I’m now almost 60. We males have shorter average lifespans so I have always suspected 65 or 70 years old would catch me. Almost unimaginable when released from the hospital in 1996, and I’ve been blessed with nearly 30 years I probably shouldn’t have lived to see. But age and death by a certain age is the fate we all face and maybe that’s earlier than the average lifespan if afflicted with sub-par kidney function for a period of say 5-15 or in my case almost 30 years. I have no medical evidence and I HAD NO DESIRE to be the “a$$” who posted this reply but it’s what first came to mind this morning and wanted to both provide an answer as well as be “that guy” as I would want to be told so I could be prepared. I hope I haven’t offended, I am most likely “blowing smoke and have no clue about your situation either in general (except the few facts shared in the short post above) nor especially in particular. As always I wish you the best in dealing with our shared condition!

[portlandpam in reply to Blackknight1989]

thanks and yes I know I am lucky to be 74 and just now realizing that I am of an advanced age! You made me smile so thanks for your comments and yeah for you to have made a good life with a real scare 30 yrs ago!!!!!! So have you been a vegetarian????

[Blackknight1989 in reply to portlandpam]

My pleasure! My goal here is to try to be a force for positive energy. I may die tomorrow, but I haven’t let the diagnosis of a potentially life threatening and probably life shorting diagnosis make me a self-loathing, Oh-Woe-Is-Me, Why me?!?!?! Not fair- potential diagnosis which is the truth, but doesn’t have to be my truth, change my life or worse rob my happiness and wonder especially as it applies to my kids discovery of this wide-world or my wife’s happiness. This disease happened to me and sure it sucks especially as I approach 60 and realize I may not see 70. BUT, I could get killed in a car wreck tomorrow going to work, diagnosed with severe untreatable cancer, real life taking in a day/month or year. If I felt sorry and pity for myself, wallowed in the unfairness of it all and became a Grumpy OleTroll. The disease would rob me of life, my piss-poor attitude would. Nothing in life is guaranteed so yoday is a good day, today is a blessing, today I live life fully not as a whiner or pissed at the world. I hope this has helped add days/months/years to my life as well. Remember Yogi Bera said 2/3 of life is what you make of it the other half is fate…lol! I’ve lived that motto. Bad break, sure, sucks, sure can I control it or do anything about it, maybe small, diet changes won’t add back a lost 10 years. But can I fix it, no can anyone fix it, not currently. Thus, I’ll worry about the end when the end is clearly foreseeable. Until then I’ll live whatever time I have to the fullest. One day my kids will see that too and I thought that was important to pass to them as I may have passed the CKD to them. I hope not and probably will never know. Neph and I think it’s familia and if so there is a chance of one or both kid being afflicted. But I’m adopted so, it’s like the craps table on a Saturday night unpredictable and unknowing. They have been tested no biomakers but I’d not wish stage 4 CKD at age 29 on my worst enemy. Anyway, probably TMI. I appreciate your kind words and willingness to listen and I hope I can share some of my hope for you!

[portlandpam in reply to Blackknight1989]

Thanks for your words!!!!! Two days s as go as first struggled with my new low kidney function my husband and I thought of how lucky we are so far and yes tomorrow a tree could fall on me so quit worrying g about impending kidney failure!! A good attitude

[Blackknight1989 in reply to portlandpam]

Well I’m pleased you agree. What else you going to do? Pull your best Monty Python? May we have your liver…er Kidney’s or at least one? Lol! As always my best to you!

[nonna70]

Good morning. Are you under the care of a nephrologist? If so, ask him if more can be done for you. My EGFR remains in the 40's. However, I am on Farxiga and now Mounjaro to guard against progression.

It sounds like you are doing much that is good-congratulations. I was told to watch my potassium and phosphorus numbers (though I've never seen a phosphorus one).

Unfortunately, I expect your family history plays a major part as does mine-several paternal members including father and uncle. I wouldn't fool with the hydrogen water. God bless.

[portlandpam in reply to nonna70]

I just looked and my GFR was in the 40s for 8 yrs so this sudden drop in one year was a bit freaky! I am in touch with Nephrologist now so maybe. She will recommend something!! Thanks

[orangecity41 NKF Ambassador]

I am 84 and put on a CKD diet by my Primary Doctor 7 years ago. It has helped slow down the progression. The diet is based on results of bloodwork for protein, phosphorus, potassium and sodium. Keep us posted.

[portlandpam in reply to orangecity41]

Are you a vegetarian now??? Thanks for getting g back to me..!I would love to make it to 84. So my grand kids would all be teenagers!! They love me now..

[orangecity41 NKF Ambassador in reply to portlandpam]

I am not vegetarian. On my diet I can have 2 large servings of vegetables

[newbie1956 in reply to orangecity41]

Hi OC...so, do you ever cheat? I love sweets but I'm finally enjoying eggs. Too bad they are so expensive 😊(still anemic)

[orangecity41 NKF Ambassador in reply to newbie1956]

I do cheat on my diet when I eat out for sure, unless get kids meal. Yes do have eggs on occasion but very expensive. I also drink almond milk. I am still anemic also. 😞

[purifire7777]

My doctor told me to watch potassium and phosphorus. I am a vegan. Man has done and are doing terrible things to the animals. A dairy farmer said, if you knew what the farmers were doing to the dairy cows you would not eat any dairy. That was all I needed to stop eating any dairy. The Bible says in Genesis that fruits with seeds is on Earth for healing. Eat what you believe Adam and Eve ate in the garden. They didn't kill and eat creatures. We need to stop eating any creatures. I also don't drink sodas. I choose not to give up coffee because it helps my brain. I am 75 and soon to be 76 in April.

Bless you! Ask our Lord to direct your steps and tell you what to put in your mouth. Ask and it shall be given. I would ask him to keep your kidneys strong.

Joyce

[portlandpam in reply to purifire7777]

Thank you so much for these ideas. I am going to try to give up animal products or limit to very very low amounts of some fish ! Or not! Have you heard of the ORAL diet which also limits grains

[purifire7777]

I have not heard of it, but I have to check it out. It bothers me that doctors don't tell individuals with early stages of Kidney Disease to watch the potassium and the phosphorus.

[portlandpam in reply to purifire7777]

I meant the PRAL diet.. my spell check drives me crazy

[Darlenia]

Chronic Kidney Disease (CKD) is an umbrella term for a variety of conditions. It's like saying you have cancer - different types have different approaches and outcomes. So, it's very important to ask your doctor(s) exactly what it is that's created issues inside your kidneys. Is it exclusively the high blood pressure pounding on your kidneys? Is an autoimmune disease attacking them like lupus or AKD ? Is it diabetes blocking and taking out those tiny filtration vessels? Extreme weight? Medications? Infections? Something else? Multiple things? Once you know what is "specifically" driving the situation, the quicker and more effectively one can address it with the right protocols. In preparing to see your doctors, take a good hard look at your labs and ask for guidance on all those items that are flagged - especially ask for guidance regarding your diet. Electrolytes such as sodium, potassium and phosphorus and others are incredibly important in the proper functioning of other organs such as your heart. Focusing on the wrong ones can lead to dire consequences. (I passed out after removing sodium from my diet when my labs indicated I should never have done that.) Indeed, anyone with kidney issues should be closely followed with a doctor ordering frequent bloodwork while dieting. This said, it's always good to stay away from processed and manufactured products and to purchase fresh fruits and veggies, white meats, and so on. Our bodies love what Mother Nature provides. I wish you all the best in getting answers and turning your situation around. What you discover may also shed light on why other members of your family also experienced kidney issues.

[WildIris]

I've been on a vegan diet with mostly fruits and veggies and no sweets or processed foods, except hummus, for several years now and my eGFR had been over 60, up from the 50s. I have to say, I love food much more than I did when I was eating more junk.

Are you near Portland Oregon or Portland Maine? I'm near Portland Oregon. I named my daughter after the wild irises that grow around here in the spring.

[portlandpam in reply to WildIris]

I am eating hummus now but I am eating low sodium crackers with it! I am not a great cook and switching to a mostly vegan ,low grain ,no salt diet is freaking me! My sweet tooth will suffer but the fear of dialysis will keep me on a better path I hope! I am writing from a stormy winters day in the original though less well known Portland, Maine

[Kidempresss in reply to portlandpam]

Hi I have been reading through your posts and the answers here. From what little I know it seems like you are doing everything you can to avoid further decline in your egfr. Congrats on your diligence. I would suggest that you have a long talk with your doctor and ask what specific things ( besides what you have already done) could help you stabilize your numbers. In my experience these doctors are pretty passive and don’t really give you good advice until you “‘go crazy”” and make them pay attention to your specific situation. Good luck and keep us posted on what the doctor says.

PS I see my doctor in 2 weeks and if she gives me any further insights that may be useful here I will post again.

[Jamok]

I too had a family history of kidney disease supposedly not connected, but it turned out it is a genetic kidney disease that was only recently discovered. Check out a ADTKD ( autosomal dominant tubulo interstitial kidney disease) and rare kidney disease.There’s actually a Support group through Health unlocked. I would definitely be getting tested for the gene. It’s done for free at a private lab.