Recently diagnosed

[Brooklyn2023]

I was recently diagnosed with stage 3B kidney disease. I feel so alone as I don’t have a network or a support system. I don’t know much about the disease but I’m reading as much as I can. Based on the information I have read this far, I’m terrified what is going to happen to me. Unlike my diagnosis of Lupus, years ago, I feel like kidney disease is a lot more immediate. I’m seeking a support network to help me on this journey to improve my health and information on how to slow down the progression of this disease.

[GFFF]

Hi Brooklyn, see it as a warning message to make some lifestyle changes, many people can reverse the numbers significantly and others stay at the stage for 10-15 yrs before it progresses. Google can be a scary place so if you want to read up only do so from trusted sites, cut out salt, no ibuprofen type meds, limit protein etc. try to exercise everyday, that doesn’t mean it needs to be a crazy workout, even a gentle walk or swim helps xx

[orangecity41 NKF Ambassador in reply to GFFF]

Thanks for good info post. I do all those things and so far things have stabilized for past 5 years. I am on a prescribed CKD diet.

[Brooklyn2023 in reply to orangecity41]

I guess I need a prescribed CKD diet. Will follow up with my PC doctor. The Nephrologist didn’t provide anything but a diagnosis.

[Brooklyn2023 in reply to GFFF]

I guess I need a prescribed CKD diet. Will follow up with my PC doctor. The Nephrologist didn’t provide anything but a diagnosis.

[orangecity41 NKF Ambassador in reply to Brooklyn2023]

My PD is the one who prescribed a CKD diet based on blood work.

[S_dillow in reply to Brooklyn2023]

perhaps a new nephro they should be working with you

[orangecity41 NKF Ambassador]

I know how you feel as can be stressful. I was diagnosed 6 years ago with CKD and been on a CKD diet. Davita does class on Chronic Kidney Disease and I attended with my wife . It was very helpful. They also give virtual classes. Keep us posted.

[Brooklyn2023 in reply to orangecity41]

I don’t have a Dietician. Just the Nephrologist telling me my labs indicate an eGFR of 38. I had to look up what that meant on-line. He didn’t explain in detail. Just to drink and stay hydrated. Stay away from salt, potassium and phosphorous. I will definitely check Davita for insight. Thank you for the info.

[barbara55109 in reply to Brooklyn2023]

Eat to your labs. Everyone is different. Because my CKD is from dehydration I need extra salt and potassium. I do use a phosphorus binder and avoid dark pop. You should get labs every 3 to 6 months and they should check these levels.

[orangecity41 NKF Ambassador]

You are welcome. Keep us posted.

[bikerchrish]

So sorry, I was told I am stage 3 and I am hearing most people get no warning until they are at least below 60 and even then many do not understand or get a fair warning. At this point please try not to panic and do your best to walk 30 minutes every day, eat less salt, check your blood pressure and make sure that is under 120\80, and stay away from processed food. Never have soda or fast food. Pray to God if you believe in him (I do) and like some other person said take this as your warning. I know it is a late warning but you are not alone in that (most of us got a late warning). As far as I understand if you do not have a fast decline you will normally lose one point a year or a little less, and you do not need a transplant until 15. On the bright side 1-your kidneys do have a lot of reserve so you can lose more than half the function and still have no symptoms or trouble 2- Many people in stage 3 who make lifestyle changes do live long lives without going to stage 4 or 5. Also, this may be a stupid thing to say but if it does not progress for 15 years they may have an artificial kidney or something else by then. Salena gomez had lupus and her kidneys failed. She already had a transplant. I know it means nothing to you but there are people in worse shape so do your best and try to slow it down.

[Ladyprudence in reply to bikerchrish]

Bikerchrish, thank you for the uplifting, positive message. That alone will bring down my b/p and spur me on follow good lifestyle changes for a long life.

[MoeAndMoot]

I am also in stage 3 and have been for a few years. I know that making significant changes to my life like eating healthy, exercising, reducing protein, salt, phosphorus, and potassium, and drinking lots of water has helped to keep it stable. I love to research so when I received the diagnosis, the first thing I did was go on my hospital's website and see what info they had. I attended an online class for those just starting on this journey. I had to deal with anger issues and "why me" for a bit, but am mostly over that (although it can creep in once and again). Make an appointment with a registered dietician as soon as possible. Most of all finding this group has been invaluable. Whether I'm asking the question or reading the replies to others, so many of the people here have so much experience with CKD and are willing to share. Don't despair. You are not alone on this journey. 🙂

[Ladyprudence in reply to MoeAndMoot]

This is what I love to read, Moe and Moot. Do positive, helpful things, and kick fear to the kerb!

[lowraind]

I was diagnosed 6 years ago. Since then, I have worked hard to stabilize. Use only approved resources. Health Unlocked has been very helpful. Other resources:

• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.

• Renal Support Network provides many support and advocacy services including a phone support line.

• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

• National Kidney Foundation provides a portal for patients too.

[S_dillow]

you come to the right place.im 3b as well.welcome home.reading here you will learn a lot.i have.

[Herewegoagain12]

Hi Brooklyn. I am a 57 yo female (ckd 4) also struggling with the loneliness this disease can bring. If you need someone to talk to pm me.

[Beachgirl32]

it can be scary but searching out support is a big plus I stay in stage three for over 20 years my is due to polycystic kidney I held out dialysis as long as I could just started it at 66 which they said five years ago I probably will need it so only diet help so much but it did for awhile or I thought it did and our mind can control a lot that my thinking anyway . Walking us great if you have access to a pool that is great excerise I think that help me a lot . I know it hard not to stress but stress does affect your body. Find something you love to do and when you start feeling that stress go to that book or garden or beach or walk or bird watching whatever it is to ease your mind body and sprit .

[Ladyprudence in reply to Beachgirl32]

I'm loving the good messages today, looks like from 2-4 days ago. I wish I could print them all and make a little homemade book with them. It might beat the socks off some of the CKD books out there now. I'm not talking about difficult to understand numbers and terms; I just love the basic common sense and encouragement. Thank you all so much.

[barbara55109]

You have a support system here. I'm 60 and found out 3 years ago. My GFR got to the mid 20 s before I even knew I had CKD. My otherwise good Dr. Didn't tell me. I had an acute issue with dehydration, the cause of my CKD, and I got down to 7 GFR. I'm back up to the mid 20 s. The key for me was drastically cutting caffeine and going on mega doses of anti diarrheals. I've been on the transplant list 3 years. Since I was under 10 I could apply. Depending on where you live, the wait can be long. It is a six year wait for me. I have also reduced my red meat consumption. I'd go vegan if I could, but I can't tolerate fiber. You'll see lots of tips here. Vet them with your Dr. Everyone's case is different, depending on the cause of the CKD. The one piece of advice not to ignore is get in the transplant list as soon as you get below 10, the us cutoff. Don't let Dr delay you.

[KidneyCoach NKF Ambassador in reply to barbara55109]

To qualify for a transplant list one must have gfr of 20 or below.

[barbara55109 in reply to KidneyCoach]

Sorry, I got the cut off mixed up. The important part is to do it as soon as your numbers allow. It is best to try and get a transplant before dialysis. I'm so hoping my body holds out another 3 years until my number comes up. It will be very difficult for me to continue working full time, and keep my health insurance, on hemo. Because I have had multiple abdominal surgeries and am loaded with internal adhesions I can't do PD.

Sadly, many people are never even told about transplant options and are passively prevented from getting on the list. Even if you aren't sure you'd want a transplant I think you should try to get on the list as soon as you can. You can always say no when you get the call. What you can't do is go back in time if you regret not getting on the list sooner. At 59 you aren't too old for a transplant.

[barbara55109 in reply to barbara55109]

kidney.org/atoz/content/tra...

[bbeba103]

Hi Brooklyn,

Sending you lots of positive vibes I can totally relate to you, it does feel like a lonely journey God has helped me at my lowest. Won't say it's been easy, and still ask God why with everything I have been dealt with now this as well. Had a neuroblastoma at the age of 6 it forever has changed my life, when I found out I had CKD stage 3 my egfr was 30, 32, 47, just a few months ago 43 will be seeing my Nephrologist April 17th. Each time I go it's like ripping my heart out from fear, but I try my best to seek God.

Stay strong 🌹

[Blackknight1989]

Here is a link that may help: kidney.org/nkfcares

[Aloha49]

Join the Bay Area BAAKP support group online monthly, as it may help. It does help me. Take care and get support as much as you can. See a therapist weekly too online which helps me. BB

[Blackknight1989]

Brooklyn, all here with great advice as per usual that’s why I like it here. I’m not sure they like me but until they kick me out im staying…lol. This forum has been a lifesaver for me. I’ve been stage 4 since 1996. So it doesn’t have to be more immediate than your Lupus. Just remember we are all different and as such each of us have what I like to affectionately call “personalized CKD,” made specific to you and me…wonderful!

I had a revelation rereading your OP so I wanted to first apologize then offer a piece of advice that may be unique if you’ll indulged me. You are brand new to CKD. ALL of us here want to help you in any and all ways we can so you don’t suffer the fear we did, don’t make the mistakes we did and do better than we did when first diagnosed. Along with several other reasons…too many to list. Plus, the state of CKD research is so much better in 2023 than it was in 1996 or whenever that unless you have diabetes and now maybe not even that now but the facts are only about 10% of ALL CKD patients ever progress to stage 5 and the majority of those are T2D (I am the big med study guy around here but no link unless someone wants it…lol). We all give advice based on that personalized factor so we all believe in the importance of different actions to effectively manage the progression of CKD. The one idea that’s the Super Hot A number One Guaranteed Way to fix yourself right now is diet. Which I bet Lee Hull is laughing all the way to the BANK (he is a purported fellow CKD sufferer who according to his story had an eGFR of like 0 or something, went plant based diet and HIS SPECIAL probiotic you can only buy from him at a gosh-awefully high price and how he’s not even stage 1). He wrote his tripe before the diet craze but I’m sure he’s making big bucks (I Digress and tongue-in cheek with the specific on Hull to make a point) my point. I have read all 145 pages of the NKF (National Kidney Foundation’s) KDOQI guidelines on nutrition which is researched by leading Nephrologists, Urologists and Renal Dietitians using all available peer-reviewed medical-studies reviewed over 500 studies from around the world and other than recommendations like like if your Potassium is high don’t eat potassium, no salt, restrict simple carbs and fats, add fruits, vegetables and nuts (otherwise clean up your diet) the science isn’t there yet to support claims that a severe modification of diet restricting protein there just isn’t enough medical evidence out there to say 20/30 grams of protein ONLY with ketogenic supplements and plant based. I’ll post one link here to prove it more if needed…(researchgate.net/publicatio.... This study is the most current and is a meta-analysis of 6 studies specifically about using soy protein in place of animal. The conclusion, Soy may be Renoproctive but more studies needed. JUST TO BE COMPLETELY CLEAR, I’m NOT railing against those recommending diet changes YOU HAVE TO MAKE diet changes but every once in a while we get our own Lee Hull stories here where someone has an eGFR of 30 changed diet and now it 96 just 3 months later…that isn’t CKD that’s AKI. SO I DID say my point right, is you don’t need a dietitian YET. Not immediately after initial diagnosis. At least not in my opinion. You need to educate yourself because as you can see there are plenty of folks (me included) who will fill that void for you. I have worked with the newly diagnosed either AKI or CKD either in hospital or since ‘98 and Ive seen my share of knowledge fillers and snake-oil salesmen in 25 plus years. With our disease you must be you own best advocate as no one will EVER advocate for you better than you. Physicians unfortunately shouldn’t are not a resource you want to put 100% trust in either because the treatments for CKD has been for the past 60 years the treatment has been has been non-existent stage 1-4 other than change diet control blood-pressure and T2D Literally no treatments, so the GPs had no incentive to address and the nephrologist only worked with those that had IgA and other more exotic causes of CkD. Please get you the best dietitian you want and adopt a plant based diet all you want I just don’t believe that NOW is the right time to do that before you know anything more than you have CKD and maybe it’s auto-immune. Here is the link to find a dietitian: sites.google.com/view/ckdrd...

Finally I’m not anti-diet modification I just know what the science of peer-reviewed medical studies says about diet. Of the diet that NKF and the ASN recommend in the KDOQI, not plant -based but the Mediterranean (and what I follow/have followed since 1996 or modified Mediterranean) and not as low in protein as was initially recommended in 2020 but just last year when the recommendations were updated about 30/40 for stage 3/4 non-T2D. Again I pick on the diet only because it is the “bestest and brightest” currently and “everybody is doing it.” But most of those are doing it based on hearing from others who did it and it worked not from any kind of expert like the NKF and ASN. They have some sort of professional help now. Anyway, how can you decide something that all agree is extremely important and will have a potentially long-term impact on your health based on 26 voices on the internet (me included) Lowraind provided a list of trusted sites in his post, start there. As I said I read all the advice and it’s a lot and it’s wonderful but my head is spinning so I’m sure you were unsure where to start. My advice is to start by becoming the smartest person you know on Your disease. Finally, Finally I apologize for the length but if you hang around long enough and they let me stay you’ll realize I’m incapable of saying ANYTHING without penning a novel. As always I wish you the best of luck and peace of mind in your CKD journey!

[Brooklyn2023 in reply to Blackknight1989]

Thank you Blacknight, your post was very informative.

[Blackknight1989 in reply to Brooklyn2023]

well not so sure about that but I hope it offered another perspective…not necessarily the correct perspective as that is subjective just another option, my best in your CKD journey!

[BecBoo02]

Honestly my numbers have been bad for a long time, last year I got my medical marijuana card, and since I started using medical marijuana my numbers are all in the green and I'm holding steady at an eGFR of 43. It's the only thing I can think of that might have changed things, because until January I have been living in a homeless shelter for 5 years, and was at the mercy of whoever made us food so I didn't have a healthy diet, and I can't give credit to antibiotics because somehow I've ended up being allergic to almost all of them. So long story short you may want to look into it. Also feel free to message me anytime I'll try to be as much support for you as I can. 👍😀