Hello everybody,
I'm new here. I got the dreadful call from my GP to say that I was probable Stage 3a CKD based on GFR 59. This has hit me so hard I find it hard to find my bearing. I cried all day and night yesterday. I don't know what to do at this moment.
Anybody with a similar story? What do you do to cope?
Any advice, words of encouragement greatly needed at this stage in my life. Thanks all in advance
Welcome to a good forum for support and information on CKD. I also diagnosed at at CKD3 (4+ years ago) and given an appropriate CKD diet by my Doctor. I attended a Davita 101 class for CKD. They gave out manuals also. My wife attended too. It helped greatly in dealing with CKD. The prescribed diet and exercise (mainly walking) has helped me. The CKD progression has slowed down. There is hope.
Orangecity41, Thanks for your kind reply. I’m glad to be part of this community. Happy to know the progress of your CKD has slowed. Looking forward to same ☺️
Hi EmmlDo not panic. Stay calm. As you will discover there is much that you can do to keep your CKD under control. Diet and exercise are key players. It strikes me that with kidney desease, you end up being a few steps ahead of the doctors because there is so much information out there. I was diagnosed a couple of years ago with a similar GFR to you, perhaps a little lower. It has not really impacted on my life apart from taking a very low dose of blood pressure medication. My cholesterol is boringly a concern but I try and eat healthily. Stay calm and try to think of small changes you could make to your daily routines to give your kidneys the best chance. Also remember that kidney function deteriorates as one grows older. There's loads of information through links on this site and reading other peoples stories.
Agree with you that we are thankfully 1 step ahead of some Doctors and know what questions to ask.
Not panic, you may of had this for years. You need to find what is causing it. Can diet help, is your blood pressure stable? These are things to ask the GP. Write a list of all the questions you need answers to. There are Facebook support groups that are really helpful. Steep learning curve when you find out if you can help slow progression . Best of luck hope that helps
In the words of Monty Python (well before my time!), you were lucky! My mum had stage 3a but was not informed by her GP but my dad noting it on Patient Access several years later! Others on here with similar experiences but, in mum's case, a tumour followed so we now have to manage her condition with 1 kidney.
In our experience, a key problem you may encounter is inept medics just trying to push statins for high cholestrol. Personally I'd check in here if/when such times arise.
Apologies for the above cynicism but I'm rather sensitive re my mum's health.
Hi Emml , Welcome to these conversations...I have found them so encouraging. I had a bunch of seemingly unrelated symptoms for a few years before my diagnosis of CKD stage 3b 6 months ago. My kidney diseases ( FSGS and MN) are caused by Sjogrens disease, an autoimmune disease. I was blindsided by the kidney diagnosis ! The doctors dove in with aggressive treatment ...steroids,bp meds,diuretics, lots of supplements, and an infusion treatment of Rituximab. I was overwhelmed. All this on top of covid. For me, becoming more knowledgable about my condition has made all the difference. Thankfully, I have two very open doctors, and can call or email with my thousands of questions ! And, as corny as this may sound, finding an activity I can focus on a bit everyday has helped alot..I started quilting. Never thought I'd be into it, but it takes my mind off ME when I'm quilting. Keep in touch !
May I ask if you had proteinuria? I too was just diagnosed 3a July 2020. Learned I have an atrophic left kidney and cysts. And "heavy" proteinuria at 1600. Going for a biopsy. My question is did you start on steroids? and if so how did that go? I have tried lisiprol and arbs but get short of breath and blurred vision when I've taken. I don't want to stroke trying to lower this protein. Any thoughts?
oceansplash, I do have ongoing proteinuria. It is the one symptom of my CKD that has my Dr pretty concerned. I started on steroids immediately after my diagnosis, so July 2020. I am still taking 10 mg. My biggest side effects are insommnia ( I sleep about 5 hours at night) and weight gain/ puffy face and neck. I don't know exactly when I will be weaned off the steroids; they told me 6 months to 1 year.
May I ask what your level is, how much they started you on and is the steroid helping? I think this is the next step for me, most likely after my biopsy next month. I'm at 1600 proteinuria now. I am super sensitive to meds so I'm pretty worried. Thank you for your response❤️
I started on 60mg in July. I now take 10mg. My kidney function has increased from 47% to 60%. The protein in my urine was 30 grams, is now about 15 grams. It seems like our proteinuria is being measured differently. Are you in the US ? But I also got two rituximab infusions in August, so that may have impacted my values.
The test says 1600 mg/g so I'm assuming mg. But not sure. A gram is 1000 mg. so that said it may be 1.6 grams or 1600 gr? But the way the neph is acting, I feel like I'm terminal. (I do have an atrophic left kidney w/ multiple cysts and right kidney as 3 cysts. I'm 59 in Florida. Like I said I can't handle the lisinopril or arbs - blurry vision and short of breath. I feel so in the dark about it all! Blood tests basically normal, do have hbp (controlled), no diabetes or high cholesterol. I thought I was doing great bloodwork wise!!!
I had that call with a similar gfr to you. Didn’t help that I was at the airport waiting to go off on 2 wks holiday. All I could hear was chronic and disease. Felt like a death sentence. When I started researching it I was able to put things in perspective. I’d never drunk a great deal of water and started drinking at least 2 liters a day. Next blood test I was around the 80 mark. So I would say that sometimes it’s possible that the simple things can help with this condition.
I too had the same reaction when my Dr called me 11 months ago. Shortly into my crying, I started looking up what it all meant and had made a list of questions for both my PCP and the soon to see Nephrologist. I basically took the bull by it's horns! I found this forum which has been very helpful, DaVita.com for the Kidney Smart course and the great recipes for us with CKD and several other websites.
Since being told, I've been to a nephrologists & urologists and tomorrow I am going for surgery on my ureter which is blocked by scar tissue. The team of Drs I have now, work together for my benefit. I follow the diet very closely which is very easy to do, my next round of appointments will be including a dietian.
Good Luck, keep us updated.
It is a shock when you hear it, I was CKD 3b at eGFr 37 a year ago, have had no advice or monitoring from the GP surgery but joined on here & am so grateful to everyone's advice. I walk each day for at least 25 - 30 mins, eat a lot of berries, cauliflower etc, have lost 2 1/2 stone. I still get pain occasionally in my left kidney & request bloods every few months to see if what I'm doing myself is helping! Last referral to Nephrologist advised GPs to monitor BP & quantify urine - not had a urine test at all at GPs or BP, however, I have a trace blood in urine (A&E advised when I collapsed in March) but was referred back to GP. The latest bloods show that my eGFr is now 50! So I am really chuffed as I've done it all on my own apart from requesting blood tests, March, Sept & the other week! Good luck!
Like most have said here- Don't Panic! ( I know I did ) after hearing the words Chronic- and Disease. I don't know what part of the world you live in - But I'm in the UK - if your at an age of around 50 - you never get told you have CKD until the efgr dips below 60. Without looking back ( on my previous posts) I got told at around 58 years of age - my efgr was 51. Long story short I got my egfr back up to around 64 just through diet, drinking more water, cutting down on my alcohol. Surprisingly the last time my efgr was 64 or above was many years before! Basically, I cut down on red meat - eat lots of Veggies cut down on processed foods on only drank a tipple at the weekend. I had always exercised so no change there. Also my blood pressure was up - not so much I needed meds, but also learnt I leant I had a white coat syndrome! I bought a BP monitor myself and its still higher than id like but nothing like it was when I attended the doctors to have it taken. In fairness I still need to drop at least 25Lb ( new years resolution) But please try not to worry - stress will not any health issue. The other thing is - yes do your research - but don't get bogged down doing it, I could I got my self obsessed - and in return, this was giving me more stress. Here is a link to my post I put up a while back- more detailed view of my journey so far. I know I may be biased - but I think this group is all you need to learn about CKD - very informative and positive group. Good luck .
healthunlocked.com/early-ck........
Thanks for the post. Really helped me. May I ask what you do for breakfast? I'm eggs and a little bacon everyday. I'm lactose intolerant and don't do milk. Too much fruit = diabetes so I'm lost! Loved your previous story btw!
Getting that phone call is awful but please don’t panic. I got my phone call in June. I think I was in denial at first. I thought I was in great health being 59, no diabetes or high blood pressure. My GFR has now stayed at 62 to 70 for 6 months. I became a Vegan in October. It was an adjustment that’s for. A good resource is dadvisetv on Youtube. He has numerous videos. There is one with a retired nephrologist that talks all about stage 3 and why most people should not worry. Stay strong, you’ve found a good support group here.
Hi Emml, just saw your post! You have had some good advice here. It is natural to feel the way that you are feeling. My CKD diagnosis felt like a bereavement, grieving for my old self when I could eat what I liked to an extent without limitations. There is much you can do to slow the progression of your kidney disease. As others have said diet and exercise are very important. Seek advice from a renal dietitian if possible. Don't forget your mental health. I think everyone with a long term health condition needs psychological support; I find meditation useful. Don't despair there can be a good life to be had following a CKD diagnosis! You have taken the first step and joined a supportive community!
I'm right there with you. The anxiety is the worse. Some days though it's like I'm so tired of the anxiety I can't worry anymore -- just too tired. So I guess I'm just trying to learn all I can about ckd, eat better, drink water, meditate, walk more and pray. And stay in today!! Don't project because that's what gets me into trouble. The what if's are the worst!! Thinking/praying for you!❣️
Yes when my doctor told me I had kidney disease stage 3 A I started crying in the office . I am a retired RN , I have had End Stage Kidney Pts and this DX scared the hell out of me . I asked the doctor what should I eat or not eat , he just said do not take meds. like Aleve and Aspirin. ( doctors do not know much about nutrition)
So after I got over the shock I starting researching diet for Kidney pts. Stage 3 .
Please do that you will learn alot . You must give up some foods , but it is worth it . Try to focus on the good healthy foods you can eat.
There are many sources online .
Devita has a list of foods that are recommended to eat that are good for the kidneys .
** Also contact your local Hospital and ask about classes for diet for Kidney disease for stage 3 in the Education dept .
During Covid instead of in person classes a nurse or dietitian will probably mail you a book to read then call you on phone to do the teaching . It is usually Free to do this class.
Start eating food that is good for your kidneys , drink pure filtered water and enjoy your life is my recommendation.
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