My life has been a hell for two weeks now. I am 30 years old, I and my husband were about to move abroad and just wanted to visit the hospital for control. And my doctor immediately asked me to be hospitalized. She said that she wanted to start my treatment as soon as possible.
I was in the hospital for 4 days, they measured my levels every day. My eGFR fluctuates between 35-and 46, so I am officially stage 3b. There is no diagnosis so far, they will perform a biopsy in the following week. Afterward, I think the type of my disease will be verified. Honestly, I am terrified about the possibilities and my feature. Because the doctors told me that this stage is too late for treatment.
I am deeply upset, I feel healthy even though my kidneys are on a critical level. I had no signs, no warnings and this news was quite heavy on me. Still, I am getting a hard time believing it. Sometimes I am too depressed to be optimistic about my situation, my researches lead me to very dark thoughts. Some other times I feel better, I believe that I can find a chance to survive in the long run. It is very upsetting for me to know that it is very risky for me to bear a child.
To sum up... I am looking for people, who experienced a similar situation at a very young age. Because I know that kidneys lose their capacity after 50 years, I am not sure if I will be able to see my 50ties.
Can you share your experiences, please? I wonder what expects me in the future.
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tas1kubra
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I’m 23 and just received a kidney transplant 2 weeks ago. Having had CKD myself I’ve seen a lot and would be happy to answer any questions you have throughout your journey
Feel free to personal message me hang on in there!
Ok Tas1kubra,I do not know where you live or what doctor told you there was not treatment because that is a lie. There is no cure, but there are a lot of treatments. But you can certainly live a healthy life with CKD and especially 3b. Not all is lost. Matter of fact, the doctor is so far off on what they said it made me angry. Where did this doctor go to school?
You need to learn from the doctor what is the cause of the CKD. That will make a big difference in what you can do. The GFR of 35-46 is really a livable level and certainly not end stage renal. Please, look at this website for more information: kidney.org/kidney-basics
The biopsy will tell you more.
Once you know what is going on, then you can work to slow or stop the progression. There are many dietary changes you can make right now. Do not eat red meat. Eat less dairy. No processed foods. Low salt. Limit tea and coffee and add more water. But the doctor should be working with you on this. If you can see a renal dietician, that is the best thing.
Have someone like you pharmacist or your doctor (although this doc doesn't sound to helpful) review any medications.
Do you have higher blood pressure? Are you diabetic? All these comorbidities can impact your kidneys. There are other things like kidney stones that might be happening that can be fixed. Even something like cysts and tumors are operable.
I really hope you will put your care into a doctor that can help you instead of painting such a picture of doom and hopelessness. There is absolutely no reason for this.
And since you want shared experiences, I will tell you mine. My kidneys were damaged by medications. This was over many years of bad prescriptions and me not knowing better. The medications caused a lot of damage as well as giving me diabetes and kidney stones. I limped along for many years, almost ten years, without doing anything because I did not know any better. But other than the kidney stones, it really did not impact my life. When I went to stage 4, I took matters in my own hands and saw a renal dietician and changed so many things about my life. I went on only protective medications, and completely changed my eating habits and exercise. I have actually improved my GFR and creatinine levels as well as other health conditions. This was over four years ago. I am much older than you, but I was told that I would have been on dialysis long ago.
Also, once you find out what is going on, there are new medications out there that are proven help for CKD. All is not loss. But I would suggest finding a new doctor. Also, why did they hospitalize you? CKD at stage 3 is usually no big deal. They do not even let you see a nephrologist then. So, what happened they put you in the hospital? You said they wanted to start treatment.... what treatment?
Thank you for your supporting words Bassetmommer. When I was in the hospital, and the doctors told me that at my stage there is no treatment, I felt like my whole world fell apart.
First things first. They hospitalized me to see if I am having an acute or chronic disease. It's been understood that it is a chronic disease. I have no higher blood pressure or diabetes. And since I was in the hospital they ran every test on me that they can, to see the main cause of this disease.
Among diabetes or high blood pressure, I was also tested for Lupus and pANCA. Because all of these diseases affect the kidneys. Now I am waiting for my biopsy so that finally I can understand the real cause of my situation. But it is not happening so fast, so I am trying to be patient.
And second, the most upsetting thing about my doctors is that they don't encourage you to try. They advised me for looking for my options regarding the transplant. Imagine that, I had no symptoms, I just went to the hospital for a check-up, and I left the hospital with a need for a transplant. Still, I am struggling, and still, I feel angry with them, for misleading me.
Of course, I may hold on to this stage, or my disease may develop. But I am heartbroken that all I could hear was the transplant option!
Anyway. I immediately found a dietitian so that I can start eating healthy. And sought psychological support because sincerely I was devastated. And I started digging.
I started digging to know more about what the doctors told me, to find people who had similar experiences to me. I am glad that I am here, I feel like I have room to fight!
Thank you sincerely.
All I can think about is getting my biopsy results, and then finding a new nephrologist, who can motivate me also.
Absolutely great attitude. BTW, I was stage 3 for over ten years. And if I had made the changes I know now, I probably would still be stage 3. My husband is stage 3 and we have changed his diet, meds and overall lifestyle and he is headed back to stage 2.... which for his age, is probably normal and he is diabetic. Don't give up. We are here for you. Ask questions, vent or just share your journey.
Thank you so much. After two weeks now I can take a breath honestly. Even if they will prescribe me with some meds, I will still look for another opinion. I have seen many people who had wrong treatment.
I hope changing my diet will help. I am trying the best I can, and I hope I can make it count.
I agree, no treatment recommendations & transplant at stage 3? Sounds unusual for that group member. I would get a copy of all records & labs from that hospital & get 2 more opinions.
When I read stories like yours and tas1kubra, they resonate with me.
In brief, I too was medically damaged by prescription medication 6 years ago albeit not my kidneys. As medics didn't want to know, I decided to follow a natural, no-medication approach. I am much better but not there yet.
I'm on this kidney forum to help mum who is stage 3 after a nephrectomy 5 years ago. Her nephro is as useless as the medics mentioned in this thread eg tas1kubra's, so we are also having to do our own, natural-treatment to help mum. At least in terms of eGFR, we are doing a good job (much better than nephro predicted) by increasing it from 36 after nephrectomy to 76 last year. Much to do to correct increasing proteinuria - by us as nephro uninterested! As he is a transplant surgeon, this probably explains why he doesn't want mum's kidney to recover in any way! Again potential similarities with tas1kubra etc.
The solution to all of these medical mistakes? Offer natural, patient-caring practitioners as an option to drug-pushing medics. I'm aware of various bodies seeking to revolutionise the medical service in such a way although clearly the resistance is strong with big pharma etc. I hope to be part if such a revolution in future.
Wow, it is remarkable! I have interest in what you have said - increasing proteinuria. What have you done regarding this detail? Have you also switched to plant-based diet? My dietitian cut some of the veggies, too.
For example, if I remove unsalted cheese and egg from my breakfast, I really don't know what to eat anymore. In my country, animal-based eating habits are so wild, that it is really hard for vegan people to eat outside. I wonder about your experiences.
Re proteinuria, we are currently focused on trying to lower glucose via diet so less carbs etc for mum She has been on relatively low protein for a while at ~0.8g/kg body weight. She's largely (not totally) plant based but with limited chicken and eggs, giving more scope if low carbs doesn't help. She has plenty vegetables and also significant fruit.
Two other points re her proteinuria:
1. It is at a level lower than that at which medics take much interest but we're trying to slow/stop it before then.
2. Some research I've done indicates it may be a factor of her nephrectomy.
PS Besides diet, she also takes some supplements incl. Cordyceps for kidney.
I'm not in your situation but you have come to the right place for some answers. Am I right in understanding you went to the doctor for a check up, no symptoms? and they put you in the hospital and ran tests? I think I would be asking for a second opinion. As Bassetmommer has said there are many things you can do to slow down the disease.
It happened exactly as you described. I will search for a second opinion. I am looking forward to being diagnosed. My disease also will tell a lot about the progress.
I think the doctor meant that you.do not need any treatment at stage 3b ..I am.at stage 3a and was told I do not need any treatment as unless you have underlying health conditions you do not need any treatment ..it is a shock when I was told but if you eat healthy exercise and cut out high levels of potassuim protein etc you will be totally fine at this level
Doctors told me that if I had eGFR of more than 60, they could use immunosuppressive medications for my condition. But at eGFR 40s, it is too late for medication, since these medications would harm my kidneys more than they would slow the progress. And at the second time I saw my doctor, he told me that I should consider transplantation.
I am upset that they did not mention that changing my diet would help the situation. Also as I understand, in kidney diseases, the main cause is treated, so that your kidney functions can be kept at the same level. But there is no medication that can increase your kidney function or reverse the damage. So I believe that I was misled at this step.
They told me that I am beyond treatable, whereas there is no treatment for kidney disease. There are treatments for underlying causes. And I think it is really important to understand this situation.
In the us you can't even try to get on the transplant list until your egfr is below 20. Where do you live where you can get a transplant at higher levels. Also here you would not have been hospitalized. I only got hospitalized when egfr hit 7 due to dehydration from a migraine. That is the first time they even told me I had ckd. I'd been at stage 3 then 4 for two years before I even knew I had ckd. No I'm at 25 and on the transplant list but expect to get deactivated since my gfr went to 25.
That is basically true. You treat diabetes, hypertension, autoimmune disease or a kidney injury. That means there is treatment but it's aimed at causes. There is no cure, but there are treatments like diet and meds.
Your Dr. is not good at explaining things. If steroids or immune suppressant meds were discussed then the cause of your CKD must be presumed to be autoimmune in nature. However, in some cases steroids make things worse depending on the autoimmune disease. I have an autoimmune disease causing my Stage 4 CKD.
I've never been hospitalized, never had my Neph discuss transplants. I think if it's autoimmune you aren't eligible.
The Dr. really jumped the gun over-reacting at your Stage 3 CKD. No reason to scare you at all. That's unforgivable. Find a new Neph, then write him a letter about changing his tactics so he doesn't keep alarming patients.
I’m a similar age to you and also stage 3b. I was diagnosed 2 years ago. Similar to you, I had no symptoms until I went to the doctors with a chronic UTI. I was told I’d been living with kidney disease for over a decade!
My condition has been stable since I was diagnosed as I’m now on medication to control my BP and uric acid levels.
Finding the cause is key to preserving kidney function. In my case it’s caused by a vesicouretal reflux which has resulted in years of infections causing a decline in kidney function.
Nephrologists told me that a good outcome for me would be to still have 20% function at aged 60. So I’m hopeful that I still have a decent amount of years ahead of me!
I am so happy to see that there are people who can lead me through these dark times. I am looking forward to having my biopsy (which was the scariest thing for me before, but now I am volunteering to have a biopsy), and having my diagnosis. Because I feel like my journey can literally start afterward. Still, I am in uncertainty that taunts me.
Actually, 2 weeks ago I was literally in misery. I was believing that I had a maximum of 3 years to live. So many thoughts of mine have changed in these 2 weeks, thanks to this platform and people here.
It seems like I have no obvious reason for this disease (such as Lupus or high blood pressure or diabetes), doctors told me that it is most likely Glomerulonephritis. But it will take nearly 3 weeks for a biopsy and diagnosis (because there is week national holiday in my country next week).
Thank you so much for your share. It helps me a lot sincerely.
If they biopsy doesn't give you a definitive answer I'd suggest getting genetic testing done. I have retina and hearing issues so my retina specialist suggest I get a DNA test done. The results came back that I have a genetic mutation that can cause the eye, ear and possibly the kidney disease along with a whole host of really ugly complications.
It is a bit scarry that doctors did not discover the reflux earlier. If you had years of infections didn't they wonder what causes the infections? Were any tests done to find out the cause, were the infections not treated in time? You are saying chronic UTI - does this mean the antibiotics did not work? Also, you are saying you are now taking meds to treat BP and uric acid but was anything done about the reflux and UTIs?
Sorry about all the questions but I also dealt with several UTIs and now have symptoms that make me suspect VUR.
There were a lot of missed opportunities from doctors to diagnose or refer for further tests.
The UTI’s are now treated. I was given a low antibiotic dose for 6 months and now have antibiotics available to take should I start to get UTI symptoms.
I would say that if you suspect VUR, speak to your doctor.
I completely understand the panic and fear taking over. I did the same thing a few years back and was concerned as my daad had been on dialysis in his 60s and i never knew why. Nsaids did a number on my kidneys for the arthritis so now i take tylenol. I watch my diet but and not neurotic. I am a vegeterian...not vegan so mean consumption is not there. Last month i lost my galbladder and had to get MRI with contrast and consulted my kidney doc first. I was fasting at the hospital so my EGFR was down to 36.. then had some denta work with to weeks of antibiotics and so thought i night still be in the 30s... well it is up to 52...
I alwasy check any new meds with kidney doc but when I want a big piece of choclate cake and milk i do it...my other abs re ok.....but my EGFR does fluctuate so take breath and enjoy living abroad... I lived in France and loved it..
We were about to move to Denmark. At first, I thought that I lost all of my future plans, and had to stay in the same city, the same house for the rest of my life (which god knows I believed that it would be 3 years max).
Even now I have doubts and fears. But maybe... after my diagnosis, I can still continue to live healthy in Denmark. Even in the worst-case scenario, if I have a limited time ahead of me, I want to get the best out of it with my husband. God knows I spend my whole life working and struggling financially. Just when I found a good job opportunity and believed that this is my time to live my life in comfort anymore... This disease fell like a bombshell in my and my family's life.
To sum up... Thank you for your sharing. I really want a piece of chocolate cake but because of panic, I limit myself too much, which also depresses me. Gosh... I feel like I can take a deep breath. Thank you.
Tas1kubra - I would take the job you want to take! I went to grad school, have two healthy young adult children and work a full time job where I run a company and manage 25 people. You can do this! And as for life expectancy, I’m planning for 90. …And unless my doctor told me never to eat a piece of chocolate cake, I’d have that piece of cake. 😀 You will be in my thoughts and prayers, as I do understand your fears.
Hi - I had to have 1 kidney removed when I was only 24. My kidney function had been going down for years. 4 years ago, I started a whole food plant based diet. Primarily no animal products and no processed food. My kidney function has gone up by 15 points.So stay positive and make some lifestyle changes. All the best.
Oh gosh, 24 is really young age to spend in hospitals. But I am glad to hear that all the benefits you are getting from your new diet. I hope one day I get better with my diet and can share my experiences with people too. Thank you so much, every sharing here makes me stronger in believing that I can make a difference.
I'm in the US so it's different here insurance wise. I had no symptoms which is not uncommon at 3b but I was doing ultramarathons (50ks) and was curious as to whether or not that would cause issues and my GP is supportive so we started tracking my blood levels. Sure enough after a year of tracking we discovered I had stage 3a CKD (you have have low GFR for at least 3 blood tests for it to be ruled CKD). I got referred to a nephrologist but he didn't really do anything so I changed docs. The new one did and MRI, ran a bunch of blood work, and did a biopsy. It was discovered that my CKD was cause by "high" blood pressure. My diet was crap and I ate a lot of processed and fast food. I am not diabetic or overweight. So now I take 2 different BP meds and watch what I eat. My BP is down to 105/84 but my kidney function has dropped to 22. While there are no cures my kidney doc is educating me about dialysis and/or transplant. I'm 58 and plan to continue to work at least to retirement age. I also have an autoimmune disease, Graves which causes hyperthyroidism but its been in remission for years now. So hang in there as there is a lot of information here that is very helpful.
Hi Sunrise-forever, Up 15 points is really awesome! Congrats! Just curious…did a doctor recommend the plant-based diet or did you have to figure that out on your own?
No doctor didn’t advise me to do it. I started a whole food plant based diet because my wife was diagnosed with a block in her artery. I researched what we could do in terms of lifestyle change which can reverse her condition. I watched a lot of videos by Dr Esselstyn and others and we decided to make the change. Her condition is much better now and my GFR improvement was not even expected.
Whatever is good for the heart is good for the kidneys. 25% of the blood is pumped to the kidneys. There are so many blood vessels in the kidneys. It has worked out very well for both of us.
Oh my God, could you really go that long? I will read about your journey immediately. I hope I can also ask some questions, too. Thank you for sharing, your journey inspires me.
I was diagnosed with CKD/PKD at age 21. Went on to marry, have 5 children, now 10 grandchildren, many moves and jobs. I started dialysis 20 + years ago, at age 43. I am now 64. Both kidneys removed, never a transplant. I've overcome 7 bouts of sepsis, all of which required weeks to months in hospital. Ive had c-diff twice, pneumonia, broken bones and most recently a mastectomy (no cancer) , GI bleed needing 9 transfusions.
Here in U.S. you cannot be considered for a transplant until eGFR is at or below 20%. Your doctors seem to be overreacting and instilling fear where there should be none. Life does not end with diagnosis. Take control by being proactive, reading, educating yourself and self-manage your care well. Diet, exercise, a healthy lifestyle and weight, no smoking, address infections quickly, stay hydrated, NO NSAIDS, education, tests, good support, good attitude, faith all go a long way to being YOUR best in the moment.
So sorry to hear your news. I don't know if it's of any comfort but my best friend was diagnosed of stage 3 at 26yrs old, her function was determined at 41%. She is now 45yrs and her function now sits at 38% so she has gone many years being stable with the condition. Unfortunately I can not say this is the same for everyone but I hope it offers a little hope and comfort. My own kidney condition doesn't allow me to offer much advice however I would say that following a renal diet can be very beneficial
Thank you so much for sharing. Unfortunately, you can not find this kind of good examples on the internet, or from people around you. It feels like I am the only one who has this disease at this young age. I hope I will be similar to your friend's situation. I am trying the best I can do, hoping that it would slow my disease.
I am both sorry for your friend and happy at the same time. It is remarkable to hear about people who can keep their functions for a long time period. I hope she can live a long life, and I will be like her.
I’m sorry you’re going through this. I was diagnosed last year with iga Nephropathy at age 33. It was extremely difficult as my husband and I were trying to start a family. I still have good and bad days but the bad days are less frequent.
Depending on your diagnosis and where you plan on moving there are some good facilities abroad.
I wonder if I have IgA Nephropathy, too. I am looking forward to hearing more about your journey, what was your level when you were first diagnosed, how was the progress for you, and also... have you had a child? Oh god, I have dozens of questions
I suspect you might indeed have an autoimmune disorder, such as IgA Nephropathy, that attacks your kidneys since your doctors discussed immunosuppressants in your presence. Autoimmune disorders can also trigger a hospital stay since those disorders can be hard to pinpoint. (I personally wouldn't be changing medical teams at this point since I wouldn't want to waste time in getting to the underlying cause.) The good news is that there are treatments for many of these conditions that can greatly improve outcomes. Left untreated, they can can be very unpredictable. I have a friend, for example, who has had several of her organs targeted by lupus, most recently her heart. Her disorder was also discovered at a young age but she managed to go on and have two children. She's now in her late 60s. So take hope if this is the outcome - treatments for autoimmune disorders have truly come a long ways in this century. Many have a quality life going forward. Sending encouragement that you find the reason soon re your situation.
Good approach. Identify the underlying cause asap and then stay on top of it. Proactivity is good. Denial and blame are stumbling blocks. I anticipate a quality life for you. After all, the 21st century stands in your corner.
Sorry to hear. I was diagnosed in 2014 with stage 3 and 4. Well last year I went to my Dr after not seeing him for 3 years, and following his advice, lose weight, no caffeine, red meat, luncheons, any salt products, and after my blood work, thinking I'm up for dialysis, he came to me with news I never thought possible. He said to keep taking my blood pressure mess and that I did not need to see him anymore. My levels were great and I no longer see a kidney Dr due to my following his advice. I'm 66 now and to this day, no kidney problems except older and wiser.
Glad you reached out to the community. I told you they would have the answers 🥰🥰🥰. I think your diet and lifestyle is key to trying to prevent further deterioration of your kidneys. I know you were scared but you will never be alone with this gang to fall back on . Keep strong xxx
Thank you for your kind words, and insights. I am paying all the attention to my current situation. I may get the biopsy this week, nervously looking forward to learning more about my kidneys.
I'm really sorry to hear what you're going through. What I can tell you is you've come to the right place. When I was first diagnosed I found this place. Everyone here helped so much. And I can help answer your questions because my story is similar to your own.
I'm 31 years old, diagnosed when I was 27 with CKD (3b as well), hospitalized a month before my wedding! The doctor who told me was very nonchalant about it. Though I have no other symptoms. My blood pressure is fine, no diabetes. Fast forward two years later. My sister has similar symptoms but has high blood pressure, which I don't.
They pretty much thought it was unusual for two sisters to have the same thing so we were genetically tested and shown our parents have the trait for this disease. My sister and I were just unlucky enough to get it. She's on track for a transplant, I'm stable.
I work in an ER and I can tell you, I know very many a people who have had transplants young and are still doing well today. Medicine is forever expanding, so we don't know where we'll be by the time we might need a transplant.
As someone your age thats been going through this a few years, I can say the first year hits the hardest. The questions of "why me" can be a consistent ask. Best advice? Fix your diet, get some damn good exercise in (endorphins), and drink plenty of water. We can't change our disease, but we can at least try to stabilize it!
PS- the child thing hit me hardest, too. I went to an OB and she basically said I can carry, but there will always be a risk. Consult an OB as well as a nephrologist. I picked an OB with 25+ years of experience since they're bound to have had at least one patient like us.
Sorry for the rant, I tried to be thorough. Always know you're not alone!
I have a sister, too. I will ask her to go for a check-up, too. I do not know if she has a similar condition or not, but I am sorry for both of you are suffering from this disease.
I really don't know if I can keep my status stable. For example, I have visited a doctor 5 years ago, and he told me there is nothing to worry about and send me back home.
So I know that whatever happened to my kidneys happened in 5 years. When I think about it, a 60% decrease is too high to occur in 5 years. Of course, I don't know what caused this decrease, I mean was it only the disease, or did nutrition that played its role, too. But I am worried that I may have an aggressive type of this disease.
Thank you so much for sharing. My husband is reluctant to have a kid of our own. He does not want me to put myself in a dangerous position. I, on the other hand, want to have a kid and take the risks. Right after I get my diagnosis I will find an OB to ask my questions, god knows I have many.
I am not afraid of transplantation honestly. But I want to get a second opinion about it from doctors, too.
Sorry you are going through this my prayers are sent for you that they find an answer why. A lot of the comments already have great advice . I am almost 66 my I have inherited my kidney disease polycystic kidney. There always a 50 50 chance my kids will inherit it. I had my kids before I knew I had it my mom had it but didn’t talk about it much only complain . So I really wanted to be knowledgeable when I found out I had it. I have a great nephrologist and if you don’t like your doctor go to another one with kidney disease you have to be proactive I found . I had my kids in my twenty’s found out I had pkd at 37.
I’m not on dialysis yet but I’m in end stage kidney disease and on a waitlist for a kidney . When I was in stage 3 I travel everywhere we did a cross country trip I even travel to Europe in stage 4. Diet and exercise help. I used to swim a lot until the pandemic hit and I didn’t go to the pool . Now even in stage 5 I walk a lot . Hope they find out why for you soon.
It's really encouraging what you shared. What was your egfr when you found out that you have CKD? How long did it take to progress to the end-stage? To me, your story is what I want for myself. Because I see that you had your kids, and hang on to your life. You traveled and experienced many things while you can. I really admire you. Also, do you have a diagnosis? What was your condition?
Tas1kubra I don’t recall exactly what my gfr was when I first found out . I was in the end of stage 2 going into 3. I was 37. I have polycystic kidney which is an inherited disease . I even had one of the first part of the disease at 42 I had a brain aneurysm and the next year another surgery for a ruptured brain aneurysm a small one they weren’t worry about . 5 percent of people with polycystic kidney can get berry aneurysm this is not with other kidney disease. I learn to walk and talk again . Then I travel again when I went to Europe I did Rick Steve’s tour and anyone who has done this can tell you it a lot of walking . In stage 3 I did London and paris and Berlin and Prague . Stage 4 I did Italy a 16 day tour and fell and sprain my ankle but I still continue. I just have a positive attitude I’m not giving up . Stage five I have done a few beach trips something a little more relaxing we rent a beach house. The one thing I had a bad habit of your drinking Diet Coke I should of gave that up sooner . You can live a good life positive attitude and knowledge . I know my next step is dialysis but they told me four years ago I would be on it and even did a home visit but my gfr kept changing but I will be ready when that chapter start . So many people on here has given me great advice .
You and I are pretty much in the same boat with PKD. Really hated giving up Coke! I'm at stage 5 eGFR 7.6 in late January. Waiting for my next neph appt to see where I am now. Hoping to get a beach trip in to Pensacola before starting PD!
Ron zone hope you get your beach trip . Prayers sent for you . Are you feeling ok with ok with gfr of 7.6 I know my brother told me he didn’t start dialysis until a gfr of 6 but he said he probably should of started a little sooner. He been blessed with a transplant going strong for 12 years hopefully One day that will be my journey .
To be honest, i don't actually feel that bad, just a tad tired some days. But I still do pretty much anything I want to do (other than eat stuff i want to eat, danged CKD diet So I really can't complain (yet). I may end up like your brother saying I should've started earlier, but I figure, what the hey, might as well get as much mileage out of these old boys that I can before starting PD. That's great that your brother is doing so well. He should get on here and give folks hope like you are!
RonZone, I see that you are hanging in there for 2 years, that is great. Pensacola seems lovely, I hope you can make it! I am starting my relocation to Denmark process, right parallel to my disease. Every person here gave me strength to continue to living my life. I am so grateful for that.
Hey, I didn't comment to you directly earlier because you had so many other very good comment responses and interactions on here. But I will add my two cents worth in that you are going to be fine and absolutely go to Denmark and focus mostly on that. Sometimes we hyper focus on our health a tad much, so find a good balance that lets you tend to your health, but not let it take your entire life focus. My eGFR is below 7 now and I get on this page every few days, but I have MANY interests and activities that have my focus as much or more than my kidneys. Sure I take my CKD seriously, how could I not with my numbers, but I do not let CKD rule my life. There's just to much more to live to enjoy and experience. So put Denmark way ahead of your disease for now. Keep an eye on it, but a tad more in the background if that make sense. Let us know how your relocation is going! And yes, I am looking forward to my "day at the Beach"
I’m glad you came to this forum, there is so much good information and support from the people on here. They have helped me a lot. The drs tell you there is no way to improve kidney function but there are many of us who have improved it through plant based and healthy eating. I wanted to share my experience because I was at a stage 3b, almost stage 4, egfr of 33 in Dec but my last blood work showed egfr of 48! I’m back up to a 3a! I eat mostly plant based with some salmon. I limit sodium a lot, drink 10 cups of water a day, exercise but not excessive. I’ve lost 30 lbs by changing my diet. No processed foods, no meat, pork or chicken. I’m not vegan though.There is hope and ckd can improve.
Kidney.org has tons of great info too.
You are in our prayers. Pls let us know what your biopsy shows. God bless 🙏🏻🙏🏻🙏🏻
That increase in eGFR! Congrats! It must feel like a hell of an accomplishment!
It is really hard sometimes, you know because I know that I have had CKD for 2 weeks. And I am impatient to see any change in my values. Many people here have experience and patience with their journeys. I mean I am already an impatient person, this disease is like an ongoing lesson to me. It's like a wake-up call, telling me to stop pressuring myself, change my habits, and have some patience!
I worked a lot my whole life. I put so much pressure on myself. I was at a point where I fixate on small points and tortured myself relentlessly. But now, everything is different.
Now not only I am trying to change my nutrition habits, but I am also I am trying to change my understanding of the world around me. Even the day I got the bad news, I looked my husband in the eye and felt regret. Regret that is why I do not appreciate what I have in my life.
I hope that all these changes make me a person, who could increase her kidney functions. Even a little bit is enough for me
Thank you for sharing, and mentioning really important points.
You’re welcome tas1kubra. I hope my results encourage you because improvement is possible and I don’t want you to give up. I’m so sorry that your dr was so harsh and that you’re going thru this at your young age. It took months for my better results so don’t be impatient and just take it a day at a time or meal at a time. Pamper and take care of yourself in ways that soothe and relax you. A lot of us use meditation and prayer and that helps us. You’re not alone and we care. 🙏🏻🙏🏻🙏🏻
I was diagnosed at 3b at 46 now am 48 my egfr is currently at 2. On the contrary the more I read the more optimistic I am. I have high blood pressure due to a tumor in my adrenals. you should change your Dr or go to another country. 3b is not end stage yet and some people had lived till 90 before they start dialysis. The goal for you right now unless you have kidney cancer is to forget about it and take actions to enhance your heart health. We mostly will not die from kidney failure but we will die from heart failure. So get yourself out of depression reduce stress move more eat a balanced diet. There is no need for a renal friendly diet until you are at stage 5 but a heart healthy like Meditarian or the blue zone diet etc it will benefit your kidneys. We can live even without functioning kidneys but we cannot live without a heart and without the will to live. Take care and be well
Your words touched my heart. Everyone says that motivation is really important when you have a disease. You are a great motivation to people...
You are so right, actually, a Meditarian diet would be beneficial for the heart, and in a roundabout way, it is healthy for our kidneys. May I ask what was your diagnosis? Why do you think it progressed in 2 years? I am afraid that I might have some aggressively progressive disease because I know that 5 years ago my kidneys were okay. But in 5 years I have lost 60% capacity of them. So if you don't mind, I wonder what was your diagnosis, and why it progressed in two years.
Thank you for your kind words, and sharing. Normally, I am a really energetic and optimistic person. I am having a hard time adjusting to this disease in my daily life. But every person here, who spends their time sharing, means the world to me. Because all your intention is to enlighten a person who is suffering, and lost in his/her way. It is a really good deed, and it really empowers me.
Right before I found this forum, I thought I (literally) was the very minority of people who are experiencing this. I don't have any relatives who had this disease. But seeing many people who are dealing with this disease daily and interminable, makes me believe that I can do it, too. I can seek second opinions, treatments, or even by changing my nutrition I may make a difference in my situation.
I am so glad. So glad that I found you here, and every one of you.
Thank you so much for sharing. Thank you sincerely.
You are welcome. I was diagnosed with hypertensive nephroserocis which is the 2nd most common cause of CKD that will lead to endstage irregardless of my diet or how much I work out. The goal for me is to keep my BP below 140/90 which is difficult because I also have a tumor in my adrenal gland that may be causing things to go wrong. However none of my Drs knew why I developed CKD and some said I am just "picked" because I am strong. Over 20 years of working out did nothing but stressed me out. So now I still watch what I eat but toned down on heavy workout. So I stopped stressing on my diseases and concentrated on doing things that made me happy without drugs or alcohol. I ate a low carb version of Meditarian diet. On occasion I also do a keto style , no not high in protein but fats from mostly fruits and nuts. I also drink enough water but not drowning myself either as it is also dangerous to over hydrate. Your cells will swell and so will your vital organs. This will lead to death too especially when you eat a low sodium diet. I was able to bring my egfr back to 48 in 2 weeks and to above 60 in a year. Our egfr fluctuates especially for stage 3 one would go between 3a or 3b and that is ok I don't know why people are over worrying about egfr since we will loose it anyway as we age. We really should concentrate on the heart health because we are at a very high risk of heart failure and higher if you have diabetes. As for me my tumor just puts me on top of the list for sudden death heart failure stroke sepsis. So for every CKD patient don't stress it will make it worse look for the silver lining and hang on to it. Read research papers or read about the disease. Ask your Dr if you have doubts. Find your happiness. Don't let CKD destroy your life.
Hi tas1kubra - It’s great that your doctor ordered a biopsy to try to understand what is going on. However, the “no treatment” statements and even “transplant” statements this early are alarming. I was diagnosed with lupus nephritis at age 19. I cannot say it was easy. I took a semester off from my sophomore year in college as the docs worked through my treatment. I was under the care of a rheumatologist and nephrologist right away. Like you, when I was in my early 30s, I was thinking about a family. The first Obgyn I mentioned getting pregnant to was not very encouraging, so I saw another doctor - one who specializes in high risk pregnancies. I had a healthy “miracle baby” at age 32. Then another heathy “miracle baby” at age 35. My babies are 20 and 23 now. I did go on bed rest for miracle baby No. 1. Lupus went into remission after first birth and has not returned.
I don’t know what my GFR was when I was 19 or through my two pregnancies, but my creatinine was slowly increasing.
I got on the transplant list at age 45 and was transplanted two years later without ever having dialysis.
I didn’t have the benefit of this forum or doctors who guided me with the appropriate diet. The proper diet is crucial in slowing the process of kidney disease. There are meds too.
I understand you are worried. My advise…
- stay on top of things and be your own advocate
- stay positive
- eat healthy (I didn’t know about the plant-based diet)
- live life to the fullest. I’m not sure why this would stop you from moving.
Denise, your miracle babies, and your story made me cry
Thank you for sharing, I am continuing my moving abroad process, in parallel to my medical examinations. I am an engineer, and I love my job. I always dreamed of moving abroad and working with diverse teams. I know not everything will be a fairytale, but I want to continue living my life.
God knows I envy my friends, listening to their daily life problems. I, on the other hand, wake up, eat, sleep and do everything in my life while thinking about my disease. I am trying to accept my disease now so that when it gets worse I can adapt myself.
I am impatiently looking for getting a diagnosis and then start seeing doctors. The upside of the doctors that I went to is that they looked for everything on my body. I was hospitalized for 4 days, and they created a long list of the causes of this disease. And they crossed possible causes while running many tests. My lupus and pANCA tests are negative, which I believe suggests that I have either glomerulonephritis, IgA nephropathy, or Tubulointerstitial nephritis (TIN). I was on Scintigraphy last week Friday, and I think the results will tell about if I have TIN or not.
I am looking forward to the diagnosis but at the same time, I am so nervous. I am trying to prevent myself from spending hours on the computer about the diseases. Because I may sometimes get stuck on details and spend hours and hours.
But I will try to read comments here more, instead of googling. Because when I come here and read the comments I feel relaxed and hopeful.
Thank you so much for sharing. It is a remarkable story of yours.
If I were you, I would run for the door. You can be at this stage for a decade or longer. They already told you that they cannot do anything about it, so you take control and change your diet to plant based and workout and stop drinking or smoking or whatever you might be doing that is possibly damaging your kidneys. Ive been stage 3 for years now. SOme of those kidney test using dyes etc. can actually damage the kidneys further. Find a new doctor. That is my advice.
do you know your diagnosis? Hearing you could stay in your stage for years, I hope I can make it happen too. Until I get my diagnosis, I started to do everything I can do on my own. Changed my diet, visited a psychologist, and searched for people like me. I will look for different experts after my diagnosis, too.
I have protein leakage. I knew about it since I wS twenty eight but didn't know it was CKD. Know one mentioned that. I have an appointment in June. They want to do more non invasive testing. But aside from the protein which was rather high until the lisinopril helped..other markers seem ok. Currently my downfall is candy and stress. But not much can be done. I wa t to try the SGLT inhibitors. See if they ok it.
Kidney disease can creep up on. I was stage 3 for 8 years before transplant or even dialysis was even discussed. You can still live a good long life. I would really get at least at second opinion from a different doctor. Tbh what you said about your Dr I would consider a huge red flag. Good luck in your journey.
Thank you for sharing. May I ask, have you followed a diet when you were in stage 3? 8 years sounds nice. Because I know that 5 years ago my kidney functions were okay, but in 5 years I am at 40%. This makes me think I do not have 5 years more. How could you slow down the progress?
At stage 3 I became more aware of diet. I didn't cut out lots of foods. I just lowered my intake of certain foods that are particular bad eg foods that are high in potassium. Also cooking things like pasta and potatoes, stopped using the water they were cooked in because of the starch.I started to drink more water. I stopped drinking fizzy drinks and juices aswell. One thing I have learnt about kidney disease is that it is a balancing act between lots of different factors.
I agree with much of what has been said here. I found out at age 26 that i was born with a single kidney. At age 30, they noticed my creatinine was 1.5. In my early 30s, I started getting treated by a nephrologist.
It is now 25 years later. My eGFR dropped as low as 11, and I was on the transplant list a little over 21 months before receiving a kidney transplant last July.
Through that journey, the doctors and I worked to keep my blood pressure under control. We were largely successful, but over time, I had to change BP meds/increase the number of BP meds to keep BP stable. I also started taking allopurinol to treat high Uric acid, and I also had to deal with low calcium levels brought on as my PTH levels continued to rise (We did this to minimize bone leaching caused by elevated PTH).
Through all of this, I was able to maintain an active lifestyle and was swimming 45 minutes four days a week up until the time of my transplant.
What I have had to learn, even post-transplant, is that rather than fixating on a single blood test result, I should look at the trends and the rate of progression. In March 2018, my eGFR dropped below 20 and was decreasing fairly rapidly. With changes to my diet and better control of my BP, we were able to avoid dialysis while I waited for a kidney.
Hi Tas1kubra, I am 31 and have stage 3b CKD also. My disease is called glomerulonephritis which was confirmed by biopsy 5 years ago after I gave birth.
My kidneys have slowly declined over the past 5 years and my egfr is now 44, I've tried a few different medications but the only one that agreed with me is losartan. I'm on 25mg at the moment but doubling to 50mg and upto 100mg if I can tolerate it. From there my nephrologist wants me to try a combination of this and a new drug together so I'm hopeful for the future.
With my disease, because it is the glomeurli dying off, my kidneys will never 'get better' and it's a scary thought at our age that one day you'll need dialysis and a transplant - but positive thinking all the way!
Once you have the biopsy you'll know more about treatment options, there's a lot of info online about kidney diets too.
I hope you have a Nephrologist. If a Neph told you there is no treatment then find a new Neph immediately!!!!
I'm Stage 4, I don't think my life is hell. I am optimistic. Attitude is everything. 3B is a shocker but it's not the end of the world and certainly not the end of your life.
Ask for a referral to a renal dietician. A plant-based diet could drastically improve your kidney numbers. Many here have gone up a Stage and have had great improvements.
You also need to have the Dr. review any medications you are on or if you take NASAIDS which are hard on the kidneys. Changing up meds can make a lot of difference as well.
Don't let stress take over. Stress is not good for anyone's health.
Now is the time to learn all you can about kidney disease.
The kidney school will teach you how to live with kidney disease. It sounds like you are seeing it as a death sentence. It's a chronic disease and you need to make changes but you can live with it. You can have a transplant or dialysis if you get into Stage 5, but you can do a lot to keep from getting there.
A biopsy to determine the cause is the best thing to do. Then a treatment plan can be mapped out. There is NO reason to give up hope, especially at 3B.
Your Dr. was wrong and has no bedside manner to tell you what he did.
Best wishes to you. Learn all you can and change your diet and exercise.
I will do that immediately. Even I find a perfect doctor I will still visit different doctors. I hate it when their interpretations vary so much!
I am following the new diet. I am also working, and cooking for myself daily is a lot of energy. Back in days I would cook pasta and eat it. Now I am trying to eat vegetables much more.
I was 34 when I realized how bad my kidneys were. I have IGA with an eGFR between 28-36. I have 4 kids, two businesses, and live it two different cities (we go back and forth). Needless to say, CKD sucks and is super annoying. The cool thing is it makes you take care of your body a lot more than you normally would! But thats kinda the only cool thing... Science is getting pretty sweet though and I see promise on the horizon for us young guys who can wait for it. Stop eating red meat now. Limit all meat as much as possible. I eat chicken or fish one a week... Sometimes none... Tons of water and look into Farxiga. Its new and risky but I have seen great results. And I get it for free which is super easy if you jump through their hoops.
Good luck and keep you chin up! This is not the end. Life goes on!
Thank you for sharing, I wonder if I have IgA, too. Have you used any medication? I do not have any child so far, but “if” I can make it happen, I really want to have a child. My husband and I have a dog, she is like our child so far. But I think I want more
You are so right, living healthy is not an alternative for us, it is the only option for us. Honestly knowing that makes me to resist the temptation of coffee (I am coffee-coholic). I hope I can make a difference on my body and kidneys with this new healthy life style. I am so stressed about feeling tired, because as the disease progresses a person feels more tired and low-energy. I hope I can postpone that phases as much as possible. If not, I hope that I can find a suitable donor, because organ donation rates are very low in my country
Why are you not drinking coffee? I drink coffee everyday (just one cup). I am on Farxiga as well as a ton of other drugs for blood pressure and cholesterol. Looking into DTS as well.
Hi there tas1kubra. I’m sorry to hear about all the distress you e been through.
My CKD is a result of type 2 diabetes, uncontrolled high blood pressure, and advanced sleep apnea. I was a complete mess in 2009, and almost died, but amazingly hospital docs managed to get everything under control.
It’s awesome that you’re taking proper steps going forward. Some points you want to consider in helping your kidney function for many more years are:
1.) Keep away from any anti-inflammatory medications, prescribed, or over-the-counter brands such as Advil (it’s what contributed to my CKD), Motrin, Aleve and even Aspirin. These types of pain relievers are evil to the kidneys, even for overall healthy individuals. I over-used Advil to treat chronic joint pain and it contributed largely to loss of kidney function. Try Tylenol instead for pain relief, it is processed by the liver rather than the kidneys. Better for those of us with CKD.
2.) Lower your protein consumption, especially red meat, no protein powders or bars, processed and other high sodium snacks and foods, any beans such as kidney, Romano, chick peas (high in potassium), limit nuts and seeds (also high in potassium), limit dairy (high potassium), dark sodas, chocolate, smoking, and alcoholic beverages.
3.) Choose more fruits and veggies like apples, grapes, any berries, cherries, watermelon, cucumbers, cabbage, red bell peppers, lettuce, green beans. Visit some websites like DaVita.com for kidney-friendly food lists and recipes.
4.) Speak to your doctor or renal dietician about the amount of your daily water intake. It is said that drinking a sufficient amount of water daily helps to flush your kidneys and also helps to raise eGFR levels.
5.) Exercise should be more cardio type on a daily basis, than weight-lifting or muscle-building. A lot of weight-lifting is amazing for muscle building, but can be rough on your kidneys. Again, speak to your doctor about any changes you make to your diet and exercise regimen.
Although there is no actual cure for CKD, we can enjoy a long life with just making a few adjustments in our diets and exercise plans. All of the above points will help to slow the progression of the disease. Also, there are many sites you can visit to get even more information.
My apologies for the long post, but I hope you will find this helpful. Welcome to the forum! I wish you all my best, dear. God bless. 😊👍🙏
Every word means a lot to me, so please no apologies for long posts!
I am trying to adapt every detail you have mentioned. Normally I don't like to eat meat, anyway. Also, I drink a lot of water in my daily life, too. So maybe unintentionally I helped my kidneys All I miss is wheat products. My dietitian limited those products. Also, it is too hard to eat outside because they put an incredible amount of salt in every meal.
Still... I am trying to adjust, and be grateful. Just out of luck I was at the hospital for a random check. I may not know about this disease until I was in Stage 5. But now, by changing my lifestyle, I may delay this stage.
I am still having my ups and downs, sometimes I feel so energetic and full of hope, but later I feel so dark about my future. Thank god I have a very supportive family and husband. Thanks to them I can hang in there.
I'm 31 years old in the U.S. and was also recently (and unexpectedly) diagnosed with CKD this year. After going to a routine check-up, my doctor diagnosed me with high blood pressure, which led them to run tests on my kidneys and ultimately diagnose me with an "aggressive" case of IgAN. My creatinine levels had jumped from 1.2 to 2.3 in about 2 months, and my eGFR was 43 when they started testing for it. No family history of autoimmune diseases, so this came as a huge surprise.
I want to echo what many on this forum have already said: there are definitely treatment options available apart from dialysis and transplant (though everyone's case is obviously unique). In my case, my nephrologist prescribed high-dose steroids and, because my IgAN has been particularly aggressive, cytoxan infusions. I'm still in the middle of this treatment plan and have 2 infusions left. Thanks in part to the advice from folks on this forum, I have also been shifting to more of a plant-based diet, cutting down on animal protein and limiting sodium to ~1,500mg per day.
My nephrologist tells me that it's impossible to predict at this early stage how my condition will progress (whether it will go into remission, reactivate or otherwise), but for right now I'm trying to stay optimistic. My latest tests showed that my creatinine had dropped to 1.5 and eGFR had risen to above 60, so the plan seems to be working at least for now.
All of this is still pretty new for me and is a lot to process, but knowing that I'm not alone in this diagnosis has been tremendously helpful. I'm so sorry that you were hit with this news, and I hope you are able to get more clarity on a path forward once your biopsy results come back.
Thank you so much for sharing. Great to hear the decrease in your creatinine and the increase in your eGFR. My creatinine is around 1.75 but my eGFR is around 40-44.
I hope the disease goes into remission as soon as possible. Is not it shocking, visiting a doctor and finding out an important problem with your body? At least you have your diagnosis and a roadmap for treatment. Imagine doctors telling you -even before the diagnosis- there is no treatment for you.
I wish you the best for your health. It is always unfortunate to struggle with a disease but when you are at this age. You are not a expecting to develop such a critical disease from your body. I was never rough on my body. I drank alcohol moderately, I hate cola and fast food, and I really dislike meat. That’s why this disease is quite unexpected for me. I am so scared, but I want to discover more about my body, and then hopefully have an expectancy on treatment or how my disease will progress.
Thank you sincerely for sharing and let us know about your progress. Every success is an inspiration for people here. And I love reading your journeys so much.
Hello tas1kubra,I cannot imagine the shock when hearing such news when you did not have any symptoms, but I can totally relate and sympathize with the way you feel. I cannot understand though why the doctors said there was no treatment for you. Did they tell you what caused the CKD?
Sorry, just saw that you are still waiting for the biopsy. Hope all goes well and the result will give you the answers you are looking for. Keep us posted.
Thank you for the sympathy Gotroot 🙏 I am still waiting for the biopsy, but preparing for relocation at the same time. Time to time I am scared, but I really don’t want this disease to limit my life. At least not at this stage. I am aware of that I must pay attention to my nutrition and by the time my disease progresses, I must be much more careful. But now, I want to continue living my life and dreams.
Yes, I am. Since I am on ACE inhibitors the protein leakage dropped from 2.9 g/day to 1.3 g/day. On my last urine collection, it was raised to 1.9 g/day, but my doctor did not consider that as an increase. She told me that fluctuations happen, and also since my creatinine clearance is around 47 - which is higher than my previous measurement from 3 months ago- she did not make any change to my medications.
Also, she said that the protein in your blood (serum albumin) is at good levels (around 40), and she was satisfied with it. My creatinine was 1.93, but I have been very active recently, and whenever I get active my creatinine rises. It has happened before, when I rest and do the measurements it drops to 1.7.
So before seeing my doctor, I was horrified with my results, but she said 'Do not focus on eGFR, it is an estimation. Your creatinine clearance is around 47, which is a measurement and more reliable.
The thing is I have FSGS. She does not support using immune-suppressive on this disease, as long as there is no rapid drop in my values. So far we do not observe any sudden changes or worsening of my disease. But on the other hand, this means that there is not much to do while this disease progresses.
So I just try to enjoy my life while I can eat everything, and can be active. I bike a lot, -nowadays- try lots of Christmas food Thank god Denmark is a beautiful country, with lots of parks and canals everywhere. I keep my body positive and wish the best for my future. Sorry if the ending is irrelative, I just wanted to share good spirit 😊
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