Good evening to all the fighters here on the forum.I've written before to get courage but it seems I need some encouragement as I'm not well.I'm thinking of seeing a new nephrologist for my diagnosis as I can't understand why the one I have now tested me gfr 13 years later from when I first developed kidney problems and was told everything was going to be fine and now suddenly I'm in stage 3 kidney disease. I actually don't know how long my kidneys have been failing and I feel angry inside, I feel like he didn't take good care of me and I'm very scared for the future as I have other health problems. I can't concentrate on my work and all I think about is my diagnosis. Can anyone please encourage me and say something positive about this whole situation? Thank you very much.
Need for support: Good evening to all the... - Kidney Disease
Need for support
Has your nephrologist put you on a CKD diet. I know the diet has helped me. I was diagnosed 6 years ago. I also have specialist Doctors reviewing my CKD as it might be related to the conditions. Maybe getting appointment with a different Doctor might help you. Keep us posted on your progress.
Thank you so much for your amswer.I will have another appointment with a different doctor I don t believe that the one I had took care of me as he should have.He told me to loose weight and to eat vegeterian mostly .I have an appointment with a dietitian on friday.Again,thank you very much I am really sad these days.
My CKD diet was based on bloodwork for protein, phosphorus, potassium and sodium. Good you will be going to dietitian.
I am trying to do the best I can.I am glad that nutrition helped you.What stage are you?
Nephologists can't stop kidney disease...the best they can do is recommend things you can do to slow it down...People with kidney disorders don't always decline to the point of Dialysis and there is no way to know who won't and who will...Sadly a Nephologists job is to order treatment for you if you do go into kidney failure...I understand how you feel because I felt the same way...Just do all you can to stay in Stage 3 for as long as you can...It took me 23 years to go from 3a to kidney failure and Dialysis..Start preparing yourself and deciding what type of Dialysis you want if you do reach that point...Knowledge will be your Best Friend and as with much in life, most of the "Horror Stories" you will read and hear about are very inacurate...
Dialysis isn't the end of the World... Its what keeps our World from ending...
Thank you so much 🙏Did you have protein in your urine?
Yes., Protienuia...FGN
Do you take any drug for this?
I took Losarten for about 15 years...I believe it helped slow it, but the Protienuia continued...and still continues
How do you feel in general?Do you feel tired?
I do...but Dialysis and being able to eat most foods, especially Protien rich food helps greatly...
I am really glad that it helps you
You are at stage 3 which believe it or not is a good starting point..in my opinion. My advice is do not put all your belief in your doctor. As someone on dialysis, if I had my time again. I would be doing my own research after finding out your actual blood test results. Do not just accept ..oh your phosphate level is OK.. ask for the actual level then research it. Change your diet and lifestyle NOW...lots of people have managed to sustain a high level of kidney function through diet. I know you are scared, we have all been through that and still have the odd wobble. I was a mess after getting diagnosed at stage 3. Put my faith in my doctor who just pumped me full of high dose steroids. The next few months I was a mess due to the side effects and they did absolutely nothing. It's OK to feel scared and give yourself time to process it all. Then start fighting for your health. You are stronger than you think. You also have us all here to rely on. Please please make those changes today. All the best x
Thank you so much for the encourangment,i need it very much.It was very sweet to say that i have alla of you here.Thank again so much.Did you have orotein in your urine?
Yes I had high levels of protein in my urine, still do. Obviously it reduces after a dialysis session.
How long did it take you to get to stage 3 on dialysis? Also how are you doing on dialysis, are you feeling good, are you functional in your daily life? Can you work?
I was diagnosed in September 2015. I started haemodialysis May 2022. I have continued to work since diagnosed. I won't lie..it has been exhausting both physically and mentally on this blasted journey 🙄🙄🙄...when I was on my high dose of steroids was the worst part and they did absolutely nothing except make my life a misery...I look back at photos of myself and I wonder how I coped. Dialysis is another hurdle to get your head around. Someone on this forum said...you grieve for your previous life and believe me you do!! Do I feel better on it..yes and no..I work in a physical job and I can run rings around younger healthier colleagues. Do I enjoy the impact on my life..nope..however its keeping me alive.The one thing I have learnt is...you just keep bloody going. If things are getting on top of you, reach out to the community or just have a day of crying or feeling sorry for yourself..its OK to do that. Then you pick yourself up and just keep going. Usually it's the fear of the unknown..biopsies, fistulas etc but once you get over one hurdle, you will get over the rest.
This journey is hard going but when I see what some people are dealing with, I think life could be a lot worse.
Sorry for rambling 😳😳😳..i hope some of that is useful. Keep us updated on any developments
What you said is very useful,thank you very much really.Do you know the cause of your cdk?Did you ever have a biopsy?
Yes I got a biopsy in 2016. The consultant said it didn't give a conclusive result. I seemed to have a mix of different things. I believe it was autoimmune.
I seeTwo doctors told me that i might have igA nephropathy but i never had a biopsy .I will visit a new nephrologist on Monday and i have so many questions.But I don t.know if anyone.can answer all these.Do yoou.jave time to exercise?Do you eat well?
so I agree completely with ziggydoodah. Stage 3 sounds shocking and takes time to digest the news but there are so many illnesses/diseases that are far worse to be diagnosed with, in my opinion. I have also just been diagnosed in the last couple of months with stage 3. Like you I am annoyed with my primary care doctor for not letting me know earlier. According to my blood results I have been stage 3 for two years and all she told me was to keep taking my blood pressure tablets and lose weight. The problem with staging of CKD is that stage 2 is actually within normal range!!! I was 60 eGFR four years ago!!! stage 3 is under 60. Why are these doctors not telling people they are close to stage 3? So like you I’m still cross about that as I could have improved my diet four years ago but it is very common all over the world not to be told until 59 or under. I am in Australia. But back to where we both are now, there is so much we ourselves can do regarding diet and exercise so I feel very lucky that I have a disease that although I can’t cure, I can greatly extend the time it will take to get worse. Nearly everyone is first diagnosed at stage 3, many people at stage 4. Just take one step at a time. Take the advice given above regarding appointments, diet, dietician etc. it could be twenty years plus before your kidneys fail and even then there are treatments and options. Try not to think that far down the track and look after your mental health now as well as your physical health. Take care xx
You are very kind and i have no words to thank you enough for your support.Do you have protei in your urine?
No I didn't have protein in my urine when it was recently checked
I know that this is very good for you.Do you know the cause of your kidney disease?I don t .They had told me glomerulonephritis nut now I am not sure for anything
My doctor thinks it was when I didn’t take my blood pressure tablets for a few months about three years ago as well as persistent dehydration as I don’t usually drink much water. Not everyone really knows what caused their CKD
No they really don t.Mine maybe it s igA nephropathy but only a biopsy can show for sure.Do you ever think about having one?Also ,do you have high blood pressure now?
A kidney biopsy is a very invasive test just to see why you have stage 3 CKD. My blood pressure is fine now. 111/72 last week
Excellent!Maybe you will never progress!
Hey, it's a common practice for Neph's and primary docs not to let folks know that they are in kidney decline until it get's close to or at Stage 3. Most folks go through Stage 1 and 2 simply by aging. As you get into your 60's and 70's your function is not going to be what it was when you were 15. So we're in a natural state of decline at that age. But for you, at age 41, that's a different story and you should've been told much sooner. I guess they don't want you freaking out when you are at stage 2 and the mental stress causing more issues than the kidney disease. But now that you are there, yep, what they say is true, do your homework for your specific issues. I'm sure your doc told you not to take NSAID pain meds like Ibuprofen and Aleve etc. Those cause kidney decline. And you will find information on this site about avoiding dark colored colas, processed meats, etc. Working with a nutritionist is good, but a RENAL nutritionist will help you with your kidney disease more than a regular nutritionist. Though they have different views sometimes of what other folks on this site recommend, cause they are trained to work with people already on dialysis. You will have a difficult time finding a dietician who specializes in pre-dialysis CKD. So test your nutritionist out, don't just follow what they say blindly.
This takes some time to go though, but if you go through the course at kidneyschool.org, it gives a ton of information about CKD that you can use going forward, and compare what your docs and nutritionist are telling you compared to that information. Let us know when you've complete that site.
Thank you very much for your reply.Yes my doctor should have told me earlier about my kidney disease but he was always "cool" about it like nothing was wrong,so I had pie e of mind that now have lost completely.If i didn t insist he wouldn t have tested me grf either which is, low.He didn t tell me about drugs anything ,thank you for mentioning that.He told me that if i don t want to "end up" on dialysis,that i should loose weight.He had also told me.that my disease wouldn t progress and it did.So i don t trust him now.I will see another nephrllogist in a few days.
I would also add Salt to be careful with and of course Aspirin is Zero...most of us eat to our Labs...learn what certain foods are high in and try to stay in the mid range
Thank you very much ,you are right!
I was pretty angry when I found out and the doctor I used at the time told me not to worry about!! Just concentrate on your diet and your GFR will go up and you'll have healthier kidneys. If your doctor isn't paying attention to you get a new one. I also got a nutritionist and plan to get an exercise consultant. I wish you the best. You have control so don't let the anger go on to long. Best,
Thank you very very much .Yes I am angry with my doctor for not knowing sooner.You seem to be dealing with the situation in an excellent way and I am very happy about that
Hi Night Whisper, I am stage 3a too and a fellow warrior. I believe from what I read, that stage 3 is a very good stage to make changes and slow down our CKD. You can do it Night whisper, think of baby steps and start now making a list… I follow diet advice on this group, and I write a list of foods that are good for me to eat … not always possible but I do the best I can for now. I try to walk 30mins each day. My hardest thing is trying to get weight off…I love sweet things!
Remember its no different than having any type of disease, there are things you can control. eg the food we eat, exercise and our weight. And there’s things we can’t control. But absolutely grasp what you CAN control.
I also take a B complex vitamin and a D3 everyday. My Dr prescriped Losartan , it is for high blood pressure ( mine isn’t high) but its also a protective factor for our heart and Kidneys. Yes you have kidney disease, yes its a lot to initially get your head round, yes its a shock …Well it was for me and I read everything to an inch of my life. BUT Night Whisperer, you, me and everyone else have a life to life, so please try and dust yourself down, look forward and write questions down for your doctor so you get the answers. But keep living positively and be reassured that you can be in control and have a good life…wishing you well… go girl, get on with planning yhe best health you can have, xxc😘
Thank you so so much for your words.Do you know the cause of your cdk?
Yes, now I do. I found out by pure chance because I got a new GP. I always seemed to have some health issue and in fact I thought I was depressed and asked for antidepressants. The Dr said she would like to check one other thing before trying antidepressants. The blood test came back with stage 3a CKD, last June. Because I didn’t have diabetes or hypertension she asked me to see the consultant incase she missed anything. So it turned out I had pyelonephritis years ago which left 3 areas of scaring o n my (R) kidney. Anyway of course I didn’t know that before and for years took trimethaprin for Cystitis and also lots of ibruprofen during the years… so thats my story xx
Also I live in Scotland so our care is totally free. I have a wonderful GP but waiting lists can be a problem but I have never waited excessively x
I think it's good that you know the cause of your condition. I don't know mine and that worries me even more. I will see a new doctor in a few days, maybe he will help me more with what concerns me. Do you feel calm about your situation? Also do you have protein in your urine?How long have you been in stage 3?
Hi Night Whisper, Yes definately ask your doctor maybe he can help re when you first had CKD, write your questions down but probably 3 at any visit is more than enough to deal with. I am 67 and sometimes CKD is not picked up till your older as you have no symptoms, hence many folks have it yet never know till later. Re feeling calm, I certainly have my moments but try my hardest to brush bad thoughts away and keep focused…being anxious only raised BP and that’s the last thing I want.
I don’t know how long Inhave had stage 3a as it was only diagnosed last June but it’s not changed and my EGFR has stayed around 56. My creatinine fluctuates a little but GP reassured me re reason. I get an annual blood check annually , that’s the only official check for now, although I can see my GP anytime. Re protein in urine, no one has ever said but I did buy urine protein sticks and it’s always been ok, but I only plan to check that every 2 months. Do you check your urine or how is protein checked, as I have never asked my GP. Wishing you well x
I do a 24-hour test to check the protein in the urine. My doctor told me to do the tests again in three months. But I will also visit another nephrologist. I will also see a dietitian in a few days to adjust my diet. I would like to I also do some exercise but I feel down now. Has your doctor guided you on diet, exercise, etc.?
Can you tell me what a 24 hr test is? Thanks x
It is a test where you have to urinate the entire day's urine into a large urine collector.Maybe you have another test in your country for checking protein in urine?
Thank you for info x
Thank you for your support 🌸💖
getting a great kidney doctor and examining your entire life and world is a start - if u want - - u can send me a private message and we can communicate privately
You blame your doctor but had you been watching your test results? Investigating the declines and asking questions to your doctor? Don't let them dismiss you...research everything, you have the internet. Stay away from Dr Google though.
I was an ultramarathoner and had my blood tested after every race and yes I noticed a decline so had my primary refer me to a nephrologist. The first one was useless so I found another.
I had protein in my urine for a long time and took Losartan for it but it caused potassium to go up. I'm not in dialysis and the dietician there is pretty useless also. I'm trying to gain weight and asked for recipes and the like and she gave me some printouts of stuff I'd already found on line. You have to advocate for yourself, no one else is living your life.
I have stage three. Had an UTI that spread. I had no idea. That trauma left me with ckd3. It’s been 2 years. The best thing you can do is to keep moving. And you really are what you eat. Use your labs as your guide. My glucose shot up quickly in a few months to diabetes. I’ve changed my entire diet and feel Alot better. Plus I’ve lost weight which is needed. You will have to monitor everything you eat or drink. You’ll get used to it. If you aren’t into your doctor find another one. It’s about what helps you. Not anyone else. Left my first one awhile ago. Took 6 months to get into my new dr whom I see for the first time on Monday. You can do this. Once you make positive changes you’ll feel much more in control. Good luck!
Thank you so much for your support and your positive mood.Tommorrow i will visit a new kidney doctor to see if I feel he is better about my problem and to guide me as much as he can. Tommorow I am also having another creatinine test to see how things are,I am very scared with the creatinine,it is something new to me ,all this situation, I know manyof you can understand how I feel.I hope everything will go ok and to start taking care of myself more and also to loose weight.I saw a nuttitionist that put me in an almost vegan diet and to be honest I am gaving difficulty in following such a strict programme.Maybe with smaller steps?Again thank you very much for your support .I have heard really good advice in this forum and it help me that I don t feel so alone with my situation.
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