Hello. I'm looking for some comfort because what I read on the internet about kidney disease is very bad. I had blood in the urine from the glomeruli of the kidneys in 2011 but we monitored it and I was doing very well things were quiet. Now suddenly it started to rise my creatinine and the percentage of my kidneys working is low as my nephrologist told me. I think I'm in stage 3 kidney disease. I'm doing tests all the time and I'm afraid that every time I go for blood tests my creatinine will be more and more up and I can't handle it all.I'm so scared it's progressing fast.I always shudder at illnesses and now something so serious is happening to me,it's a nightmare.I thought I was doing fine,I don't know what this new kidney problem is.Can can someone give me some advice to get courage for my disease? What would you say to someone who has just been diagnosed with kidney disease and is panicking? I am very sad and scared, I feel like my life is over and I am worried about my family how will I leave them .
Newly diagnosed: Hello. I'm looking for some... - Kidney Disease
Newly diagnosed
Love the name Night whisper. So first of all, you got this. The best thing about CKD is finding out early you have it and then doing something about it. Not sure what you mean by glomeruli of the kidneys. Do you know what stage of CKD you are at?
So, there are things you can do right now to slow any decline. You know your creatinine is climbing. That in itself is not always bad. Do you eat a lot of meat? Do you work out or do strenuous work outs? Do you take any supplements and if you do, do you know what is in them? These things can raise creatinine. It is the combination of different labs that truly indicates CKD and what stage.
For now, until you know what is going on, you can do the following.
Learn about food: Stop eating red meat, or processed meats or even cold cuts. Limit protein intake.
Do not take any ibuprofen EVER
Discuss any supplements or vitamins you are on with the doctor. Check your medications for being renal safe. You can do that with your pharmacist.
Drink lots of water to help the kidneys. I am talking up to 2 liters. Unless told by your doctor not to.
Watch what you eat. Look for whole foods, natural, organic with little to no preservatives or additives.
Watch your dairy intake. Switch to a plant based dairy product like almond milk or creamer.
Watch you salt and sugar intake. Salt makes you retain water and stresses the kidneys to remove it. Excess sugar is passed out of the body through the kidneys.
Get moving if you are not doing some form of exercise.
Get educated. There is a ton of GOOD information out there to learn about CKD but know your source. National Kidney Foundation or AAKP are both legit organizations to start with.
Do not panic. Stress is not good for your body as a whole.
There are a ton of people just on this site who have CKD in various stages who slowed the progression to a crawl for YEARS. I was stage 4, had other comorbidities that were contributing to my CKD that I could not control, and declining fast when I made all sorts of the changes above and kept off dialysis for 6 years. If I had caught it earlier, I would probably still not be on dialysis.
Ask questions, we are here for you.
Thank you so much for your answerseriously.I need a lot of support I am not handling it well.It is a new reality for me and the fact that I dont know the cause of my kidney disease terrifies me even more.I only know it s not diabetes or hypertension.I am at stage 3 I think.Now I'm in the stages of getting tests to see what's going on and my anxiety is out of control because I'm afraid some other even scarier disease is causing my kidney disease and I can't find peace.
You know what really scares me? I'm afraid that every time I have a creatinine test it will be higher and higher.This is what happened now.
I don t eat a lot of red meat,very rarely and i don t do weight lifting.I am overweight and i need to loose weight,about 15 kg or more.
I do drink a lot of water,but how that helps kidney disease?Also I don t exercise at all u fortunately but I itend to.
I don't know how I will be able to cope with all this stress I am going through, I am having a very difficult time and the fact that I am sick-phobic - I always was - to an extreme degree has made me psychologically ill.
Yup, you have no idea how much I get it. All of us at one time or another go through shock, denial, anger, depression and then, finally acceptance. It is normal, and logical. So much changes when you are working with a chronic illness. But fortunately, unlike many illnesses, this one you can do something about. Be kind to yourself while you go through the discovery process. At stage 3, there is soooooo much you can do to help yourself. I too was way overweight, still am, but I lost 50 pounds. That helped. I started an exercise program that I loved. Find something like a pool and do water walking. Easy on the joints, and the weight you carry normally floats. I know that's funny, but you can do much more in the water when you are heavy.
Why drink water? Think of your kidney as a filter for the blood. Toxins in the blood go through the kidney and get filtered out, and you pass the toxins out in your urine. When the kidneys work great...then you have a GFR of 100 or above or 100 filtering. When they get ill, then the GFR indicates how much filtering they are doing. Stage 3 a is between 45 and 59percent of the kidney filtering function. 3 b, between 30-44 percent. Which means that the kidneys are still filtering but not great. When you drink water you aide the filtering process and removal of access fluid. Seems weird when you add water that it helps remove water, but it does. You pee more and that helps.
As for your mental health. If this is more than you can handle, then talk to a professional. But here is something to think about. Most people do not die from CKD. If they die, it is more often from heart issues or other illnesses. If you heart is good, you'll be fine. That is why exercise is important. There are treatments you can do if and when the kidneys no longer work. And let me tell you, I went down to a GFR of 7...yes seven percent function, before I started dialysis. I do home hemodialysis so I can do it when I want in my home. When and if your level get near 20 percent, then work on getting on a transplant list. I won't overwhelm you with that. But you can also start now about reading about it and learning. Maybe you can find someone to donate one to you. BUT..... you are no where near that situation. And you may NEVER be.
I hope this helps.
Thank you again for your answer.The thruth is that I am not well.and I am worried about my mental health.I don't know how I'm going to make it to work this week and how I'm going to be able to wait for the results of so many tests. And then probably more tests maybe even a biopsy which scares me so much because I'm afraid I'm going to have something horrible. I can't find comfort nowhere but your words softened my heart a little. I was always very afraid of getting sick and now my worst fear is happening, I don't know how to manage it. And where else can I ask for help that I need so much.
Find yourself a good therapist! They can help you work in reality, in the present, with increasing ease. In the time being, consider your breath (try paced breathing), meditation (helps to see that thoughts are JUST thoughts, not truths), walk in nature, if you can, give yourself 30 min to worry (maybe journal your worries) and then that’s it, til the next day. Pray. Read. (And listen to bassetmommer!)
And rinse repeat daily. Blessings. You’ve got this. 💙
Thank you very very much!Thanks everyone here for the support,I need it very much at this stage of my life.
I was diagnosed at CKD level 3b, and the Doctor put me on a CKD diet, which has helped me. The progression has slowed down. Maybe inquire of your nephrologist about an appropriate diet based on bloodwork for sodium, potassium, phosphorus and protein. Keep us posted .
Thank you very bery much for your answer.I meed support at this stage of mylife as I am petrified.I don t know the cause of my disease and that scares me even more.I only know it s not diabetes or hypertension.I wish I was stronger to handle this situation with more grace but I am not.
I do not know for sure the cause of my CKD. I was taking Mobic , an NSAID for arthritis , prescribed by a Doctor, for over a year which could have contributed, plus another medical condition that could cause it. Age could also be a factor. Thankfully is some remediation for me (diet).
Ι really hope everything goes extremely well for you !
The fact that you had a little blood in your urine back in 2011 might indicate something that has been dormant for all these years or it may have been from the bladder like a UTI. Taking NSAIDS can definitely contribute to the decline if you were on them. That was the case with myself and my wife. At 41 years old, your kidneys should still be functioning at almost full capacity so I don't think that's an issue. Do you have access to your blood work results that you could post here to give us a little insight to where you are?
Thank you very much for your answer.I never take NSAIDS so this is not the cause.Nor diabetes or hypertension.Tha national kidney foundation mentioned something that i might have interstitial nephritis because at the moment i dont have ood or protein in my urine and i am terrified.I don t know if this is the case but I am teally scared i might have something even worse that causes my nephritis,my mind cant stop making the worse scenarios and I am in extreme pain and fear because of this and my nosophobia.The "funny" thing is I always thought that those who are afraid of diseases don t get them.How wrong was I.How can I handle my extreme fear?Please help me
ok...you are making yourself worse. Stop looking at Google if you are. Nephritis means just this....inflammation of the kidney Quite common.... and could be from a million different things AND can go away. Why was this such a shock? You said you were having regular tests done. If you were having regular blood labs, they should have seen your GFR earlier.... unless this came on suddenly. Which by the way, can change and go back up.
Not having protein in the urine is GREAT! that is what you want and no blood is what I think you meant.... also great. You said you were in pain....CKD does not have pain associated with it at stage 3a. You are making yourself crazy. Let the doctor figure it out.
No i don t have pain I might confused you by accident.I don t have any pain at all.Again,thank so much for your encouragement.Unfortunately these things are my worse nightmare and I cannot face them with grace as I should.
Also i would like to add that they didn t see me Gfr earlier.I think they should have.Maybe I must change nephrologist.
If you are seeing a nephrologist, someone saw something earlier and sent you to one. You do not just "go see" a specialist like a nephrologist. Seeing a nephrologist in itself is very rare at stage 3. So..... I am a bit confused as to why all this is suddenly freaking you out.
It is the creatinine that goes up.I never had such a problem ,I had normal creatinine levels always.And I am afraid now I am getting worse.
As for the other thing you said,at what stage do you see a nephrologist?They sent me to one at 2011 because i had glomerular hematuria based on a cytology test
and the nephrologist did not do any more tests? No ultrasound?
I just had an ultrasound and everything was normal.What could he find?
You mentioned that you have no protein in your urine. I don’t have his name, but a retired Nephrologist I’ve heard on the internet has stated that no protein in the urine is a strong indicator that you probably won’t decline and have to go on dialysis. Perhaps someone on here knows the name of that Nephrologist and can link the interview? or provide personal knowledge to refute or confirm this statement?
Yes it would be great of we could find more information about that
Nightwhisper, I can feel how sad and afraid you are. I was diagnosed out of the blue 2 yrs ago at stage 3b GFR 31. I was told to go to a nephrologist….no referral…just go find your own. My labs were good because my protein potassium phosphorus were normal. He gave me a prescription to have a full panel that includes A1C, I also had an MRI on my bladder . And an appt 3 wks out. I went thru all the grieving stages and cried a lot. I kept blaming myself for being ignorant about my heath. I has alway exercised several times a week, kept a mostly healthy diet, active, worked, daughter just married. So this diagnosis sent me very low. I did seek out a therapist because I didn’t know what to do and was having crazy thoughts.. that helped a lot but being with this community is a wealth of information for our condition.
Get your panel done MOST IMPORTANT get yourself a copy before you go back to Dr. google every test …what was it for? Look at your range . If your ok move on to the next. If you find a concern mark it so you can discuss with your neph.
Consult with a dietitian because it’s all about what goes in our mouths and we all eat our labs. But it’s not as easy as it sounds it’s 6-8oz of protein , xxgrams of potassium, our labels do not post phosphorus but there’s an app you can down load that will give you the fruits and veggies you should eat. Until you can see a real renal dietitian. Don’t eat meat, deli. meats, anything with preservative.
Are you alone or do you have a partner that can help you thru this.
I still cry bc I can’t believe it happened to me. My daughter just had a baby.. they live on other continent . So I go to my dark side and wonder if I’ll be around to see him grow up. Also what haunts me is my BIL had CKD for 10+ yrs and on dialysis 8 yrs. The last 2 yrs were very difficult for him so he passed in July last year. That put me over the edge.
So Nightwhisper, we all have been to and through our dark sides yet I still enjoy the beautiful things. What can we do.? Once you get your labs nd diet done and can get a handle of needs to be done, you be ok, your only stage 3. Eating correctly to your labs will bring that number up. Drink lots of water. No sodas
Lmk how you do.
.
Thank you very much for your support amd your kind words.I will try as much as I can.I.still have a long road with the tests I should do but I hope everything goes ok.I wish the best for you too and be optimistic,the opposite makes our health worse mI know it very well as K suffer from extreme anxiety.I will keep you posted.
Bassetmommer mentioned the National Kidney foundation. There is an incredible amount of information on there. Also, I believe you need to see a therapist to help you with your fear. Here is what I do when I feel my anxiety ramping up: I do "square breathing". Inhale to a count of 4, hold it for a 4 count, exhale slowly while counting then hold it at empty while counting. Repeat til you feel better. It will stop a panic attack. Also, meditation helps, so does music
Thank you very much for your answer and your suggestions.Unfortunately my anxiety is too much,I am on antianxiety medication
You mY find the breathing will add to your peace of mind. They even teach it to the marines. Good luck
Thank you 🙏
Here is a link to information on eGFR from National Kidney Foundation. It also references eGFR and age. kidney.org/atoz/content/gfr
Thank you very much
Hi Nightwhisper, sorry for long post….but just like you I was diagnosed at stage 3a in 2023. I have felt exactly like you, very very scared and thought ‘oh no this is it a downward spiral’ . But after reading and asking questions on this group I am adding to my health plan.
I am so glad I know I’m at stage 3a because I can change my lifestyle. This is what I am doing now and will build on this as my knowledge grows from this group.. . I walk 30 mins every day, my main diet is vegetables, peppers, fruit , fish, chicken and eggs. I eat white danish bread 65 calories a slice, porridge . I like wee teaspoon of chilli sauce with salmon and honey on porridge. This group gives loads of information re foods, which I am still very much learning.. I am still having cows milk at present but trying oak, almond and rice milk but its difficult. I still have cake as I love sweet things . I don’t (or should I say very rarely) have processed food or red meats. And buy the lowest salt stockcubes etc. I am getting there slowly!
I am not diabetic nor do I have hypertension but I know now I have scaring of my left kidney from a serious infection 50 yrs ago! I am 67.
The only other thing I can add is that in Scotland I get an annual blood review, I make appointments with my GP if worried and she was closely monitored my blood pressure, so although its normal I am on Losartan to make sure it stays low. I but D3 and a B12 as recommended by the warriors in this group 😂
Oh and I am trying hard to lose weight as I need 2 st off… so watch this space. Keep calm, make a plan and your life is very much for living. Hope this helps. Keep us posted xx
Thank you very much for your answer and your kind words.It is a very difficult time in my life right now and I am trying go gain courage because I am a mess
Nightwhisper:
I would like to recommend two things to you that I believe will allay your fears. First; click on my profile and read the previous posts that I have sent to this group. I write about how (with the faith in God) and good medical information that I was able to get my kidney function from Stage 3 to Stage 2 (which is normal for my age of 75). I also learned what to do to decrease my creatinine level significantly by following the advice of a nephrologist on YouTube, intermittent fasting, certain supplements and faith and prayer to the LORD Jesus, who calmed my uncontrollable fear about my kidneys that made me sick from so much worry and I would go into panic whenever I had to have tests done. So I do know EXACTLY what you are experiencing and how paralyzing that fear is. But I put my faith and trust in God and the Lord Jesus Christ, and following the recommendations of this nephrologist that I will refer you that completely relieved me of all my fears, and now I don’t even give my kidneys a second thought. I just am careful about certain foods and make sure I drink plenty of water and exercise and that’s about it. The stress of being fearful and worried is more harmful and can damage your kidneys far worse than anything else you do or eat. The name of the YouTube channel is dadvice tv. He has a doctor on the show often by the name of Dr. Rozanski, who is very knowledgeable and has many years experience treating kidney patients. He speaks in a very supportive manner and has a way of calming a person down about their fears concerning their kidney function. I highly suggest you find that channel and listen to Dr. Rozanski‘s messages – I believe it will help you tremendously. …this is a great episode to start with: youtube.com/live/sK6VI3L9fv...
If you believe in God, there’s a promise in the Bible that says we can cast all our cares upon him because he cares for us, and he will give us perfect peace if we keep our minds on him and trust him . I know this to be 100% fact in my life. I was an uncontrollable frightened worrier and would imagine all kind of horrible things as you are doing…. Not good! I hope this helps you. Look up the post that I had entered in this forum about what I did to improve my kidney function and it may be helpful to you too. (it is the post titled “there is hope for CKD – my story”)
I know it’s hard to do as I’ve been in your shoes, but try to be optimistic and not think the worst, don’t use your energy thinking about “what if” and instead think about all the opportunity you have to improve your health, and with faith in God, all things are possible
Thank you very very much,I will absolutely follow your advice.I am startin from now.You are.very kind ,thank you so much for your encouragement.
🙏🏼🙏🏼✝️
Yes, never underestimate the power of prayer. 🙏😀
I was diagnosed 7 years ago with stage 3b and its been steady at that level for all these years. My creatinine is always a little high but it fluctuates around high numbers. My nephologist believes it's because I may eat too much animal protein for my kidney to handle. While I do eat lots of fruit and vegetables, i also eat small portions of meat or fish several times during the week. Aside from talking about diet, we should be talking maybe about your anxiety which seems to be reaching almost panic proportions. It easy for us to say "calm down," but it's not easy to tell you how to do it. Are you seeing a professional for this? If not, please consider doing it. The anxiety and phobic fears you're expressing are greatly out of proportion to your health issues. You need professional help in getting that intensity down. Hopefully, you can get help to reduce your stress levels so you can begin to work on some of the good advice thst others on this site have offered.A lot of us consider ourselves lucky thst our medical problems involve the kidneys because there are positive things we can do to deal with this problem and slow the progression. Good luck. Keep us posted on how you're doing. They're alot of people on this forum who are available to support and encourage you.
I don't have words to thank you enough for your message, it encouraged me a lot. Unfortunately my health anxiety is really out of control. I see a psychologist, I do psychotherapy and I have always been terribly afraid of diseases but I believe that behind this fear is something else that I don't have locate.Thank you very sincerely for your message, everyone here is trying to help and I appreciate it immensely.
Just a reminder that when you start looking at diets, make sure you remember to diet to YOUR labs and to any medical problems you may have. There are hundreds of legitimate renal recipes online that may not be appropriate for you or for me. It can get confusing if you let it. You got this. So glad you're getting help sorting out your fears
Thank you very much.I am trying to confront my fears my until now i do not have success.This health issue that I have is making me petrified from fear unfortunately
Have you tried medication for anxiety? Also, about your fears concerning medical issues: did you really believe that you could go through life without ever having any. Kidney problems are some that can be easily managed. Good luck
Thank you very much for your answer
P.s Yes i have tried medication for anxiety they just raised the dose because I am not well
I'm sure the increase dose will help. Anxiety can make everything so negative. And, it usually develops when we have a push/pull conflict that we can't resolve. In your case, you desparately don't want to get sick, but unfortunately you did develop a kidney problem. And, You don't see a solution and alot of stress develops. The solution I see to break the conflict and reduce the anxiety is to accept the medical problem knowing that you can control and can manage it by following all the good advice offered here as well as by your medical team. Life happens and so does medical problems. Best always
You speak very nicely and I thank you very much once again for trying to help me. I deeply appreciate it. What I am trying to get out of my mind is that something even worse is causing my kidney disease. If I only have kidney disease I will do whatever it takes out of my hand to deal with it exactly as you say. But what I say is paralyzed by fear is that I believe that something even worse could be causing my kidney disease that they haven't found. Do you know what I mean? I can't control this fear.
Oh, I do understand now. You seem to have accepted the kidney problem but now you're stressed out that a serious illness could be causing this kidney problem. There are several problems and behaviors that contribute to kidney disease. In your case, are they trying to find out what the cause might be? I believe people on this forum can tell you that whatever cause may be found for you situation, the kidney disease is still a workable issue. Finding the cause may simply tell you how to go about trying to stabilize the condition. You say you were first diagnosed in 2011. Didn't your kidney doctor at the time find out what the cause may be? You've had kidney disease for around 12 years and no one tried to figure out why? Listen, let me share something with you: I think if you had a very serious illness that was causing the kidney disease, believe me you wouldn't be having panic attacks. You'd be to sick to have them. So, breathe, face the facts when your medical team share things with you and start working on stabilizing your kidney disease. As I said before, life happens and so do medical problems.
Yes, that's exactly what I'm afraid of. Now I'm in the phase where they're still doing some tests. The thing is that the national kidney organization told me from my symptoms that it's probably interstitial nephritis, while in 2011 they told me that it's glomerulonephritis. So based on this data the problem I have now is different from the one I had in 2011 and it scares me a lot as I don't know the cause and I keep thinking it might be some cancer or some horrible autoimmune disease that cannot be treated. In 2011 I had blood in my urine and they did a special cytology test and since things were quiet they just monitored me often. But now the creatinine seems to be going up and I've never had that before that's why I'm so scared.Again thank you very much for trying to help me I feel very lonely and scared
Lovely reply, your words were good for me too, thank you xx
drmind
You're welcome.
Dear Nightwhisper, Bassetmommer has given you some great info, and I pay attention to what she writes. The initial diagnosis of kidney disease slams a person right between the eyes. Please, take some deep breaths and try to calm your mind down. It’s very difficult to think rationally, when the mind is in panic mode.
If you begin following Bassetmommer’s suggestions NOW, you will do yourself a great service, and go a long way in protecting those precious kidneys. I believe it would be of great value to your peace of mind, if you find someone to discuss your concerns and fears with.
I was diagnosed with Type 2 diabetes in the early 1990’s, which I kind of ignored, because I thought I felt OK. Then, I discovered my own CKD in 2019, as I was looking over my lab results. My doctor never noticed that my GFR was at 32, which was already Stage3b. She was actually nonchalant, as she informed me that she was referring me to a kidney specialist.
As an overweight individual, who prized food above all things, living or otherwise, the thought of a strict nutritional program was akin to throwing myself over a ledge and landing in poison ivy. I tried to be more careful, but still convinced myself that I could still have my favorite foods, if I was “careful”.
In 2019, at the age of 72, I had to have an aortic valve replacement, along with a double bypass. I was warned of possible kidney failure, but I had a successful open heart procedure, and my kidneys remained stable. I paid more attention and lost 50 pounds, but gained back some of it from careless choices.
From 2021 until now, I’ve had Covid twice, a reverse shoulder replacement, and I was diagnosed with stage 3 non alcoholic fatty liver disease. During that time, my kidney function went down to 23. At this point, I’m really serious about adhering to a nutritional program, and I’ve lost almost 65 pounds. My GFR is currently at 29.
My whole point in exposing my tale of woe, is that I am still here at 77. I have had my share of health nightmares, and had more panic attacks than I deserve, in my opinion. Through doing my own research, much prayer and taking as much charge over my choices that I can cope with, I am more resigned, and calmer. Do not allow your fears to overwhelm your sensibilities, and project possible illnesses onto yourself that you have no knowledge of. Easy to say and harder to accomplish, but you can do it! God bless you!
Thank youso much for your answer.I appreciate so much the fact that you are trying to help me with your kind words.Indeen my fears are worse than my kidney problems because they make me suffer so much.I will follow your advices,again thank you so much for your support
i am 3b now since 2019. i have had covid twice and am a t2 diabetic with chronixc heart failure.divinity never gives us anything we cant handle.ease your fears,take it one day at a time.enjoy a sunrise,a sunset.talk to who you need to.you got this.
Thank you very much for your kind words and I wish you all the best
As a stage 3 and a retired social worker, I encourage you to work with all of your professionals to live your best life.
Thank you very much
I understand the anxiety of being diagnosed with CKD. I was also recently diagnosed with stage 3A.
I’ve suffered from anxiety in the past. I chose to get counseling and got help. I took medication to help control it and now am able to self manage (without meds) utilizing techniques that I learned.
As stress in itself can be detrimental to your health it’s important to learn to manage it as well.
Stress can cause inflammation in your body. I have read that Kidney disease is an inflammation of your kidneys.
The key to managing CKD is diet, and taking care of your mind and body.
The good news is that you have discovered your disease early enough (in the first stage that it is typically diagnosed) !!!
It’s good to know that research has shown that by making changes to our diets and lifestyle we can slow the progression and potentially reverse the damage of the disease .
In the past 5 -15 years scientists have made significant advancements in research about CKD. It’s very exciting as they are making progress!
They are in the process of changing the playing field by providing knowledge that those of us with the disease can utilize to take control of our health and potentially positively impact and reduce the damage to our kidneys.
Sadly propagating the knowledge to mainstream is lagging behind.
Also providing a comprehensive toolsets to make it easier to track foods, nutrients, protein, calories and water for all around health including for our kidneys does not seem available mainstream.
Ease of access and tracking at a low cost will be key to being able to reduce the number of kidney disease cases longterm and help those already impacted to improve our quality of life.
Controlling our disease all about educating ourselves and getting help to learning and implement positive change… eating a kidney friendly diet. Sadly it is difficult to find reputable resources.
There is no magic pill. Pills can actually contribute to harmful effects on our kidneys Discuss any medications and pills that you take with your doctor.
You are fortunate as at this time in your life you can still be proactive and see positive results. You most likely will be able to get ahead of your CKD That’s awesome!
I know that you are concerned about the cause, in general there are a several factors diet, lifestyle and family history. Some children are diagnosed early due to anomalies with their kidney structure or early childhood disease .
My illnesses is likely a combination of a lifetime of a kidney poor dietary choices and hereditary factors.
My recommendation to you is to consult with your doctor. He’s your best resource for that information. I find it beneficial to make a list of my questions for myself and the doctor . That way I utilize my time better and don’t forget any key questions.
Unfortunately it’s difficult to find reputable source for information online. As someone mentioned the best online sources are the kidney foundations .
I’ve found a few books by reputable kidney doctors that are backed by scientific studies that I’m reading I don’t know yet if they are accurate but will discuss with my doctor. It’s important to carefully check the authors credentials .
Be aware that the kidney diet books don’t necessarily contain recipes that balance getting the appropriate nutrients, calories, protein and kidney friendly minerals. Just managing the kidney related items is not a healthy diet Unless you track the nutrients and calories as well
I am going to ask to work with a kidney dietitian to help me navigate through that change.
I always thought that I had a good diet. I watched my calories and tried to incorporate the various food groups.
What I did not understand was the amount of kidney damaging elements I was putting into my body.
It was eye opening to use the kidney foundation app to track the amount of salt, potassium and phosphate and protein in my diet . I downloaded it from the Apple App Store. It’s cumbersome to use but a starting point certainly eye opening . It needs a more 360 degree view of dietary needs
While I don’t add salt to my food I did eat a lot of convenient foods and prepackaged and processed foods. They are easy to fix but that are loaded with all of the minerals that are difficult for the kidneys to process.
Now I watch the labels and track it .
I did not realize that there was such a thing as eating too much protein.
Most people eat more protein (sometimes twice as much) than the recommended daily allowance,
This causes the kidneys to work harder processing the protein which can cause damage. There is a limit to how much protein your kidneys can process each day Thus the RDA Eat too much puts your kidneys working overtime to eliminate the toxins from your body thus resulting in additional damage.
These are all things that I am learning from books by reputable authors based on studies done within the last 10 years. (Both books list case studies to support their data. I have not confirmed the data)
Do your own research.
I like many had to wait for 3 months to get an appointment with a kidney specialist.
Meanwhile I’m trying to educate myself in advance so that I will know more about the disease and have a list of questions in advance.
I need to start taking baby steps towards a better diet and exercise plan rather than waiting . However it is overwhelming. I just realize that in advance and do a little bit at a time It may take me awhile to educate myself, but I’m making small progress each week.
It is much better than not doing anything. In the long run it will pay off. The disease and damage happens slowly so each positive change to my diet and lifestyle will give me more time.
Like you I was surprised and concerned about the impact on my quality of life longterm. It is scary!
It is unfortunate but there seems to be a gap in the education of the medical field (as in primary care and doctors who don’t keep up with the latest developments in this area) and mainstream dietary guidelines regarding this disease.
Again be thankful that you have discovered your illness early and focus being proactive
You have time to learn what you can do to be proactive and maintain your kidney health to avoid future health issues related to your kidneys.
Stay positive!
You got this!
Thank you very very much!
Age 68, female, about 20# overweight. No diabetes. Stage 3b kidney disease, GFR 30 to 35, depending on how well I adhere to diet. I have benign resistant hypertension, which has damaged my kidneys. Average morning BP is about 165/100, and has gone up to 200/115. I am maxed out on Valsartan and Verapamil BP meds. My doctors were concerned why GFR dropped so rapidly and why BP could not be controlled. I was on over 10 different BP meds over the last year. Nothing works. I had a kidney biopsy last November. Biopsy showed monoclonal protein cells in kidneys. 6 weeks ago I had a bone biopsy. Tomorrow I start chemotherapy for Multiple Myeloma. The excess protein being produced by my bone marrow is attacking my kidneys and raising my blood pressure.
Now, before you go scurrying to Google to see if you have this, I can tell you right now, you don't. Benign resistant hypertension is a main component of this illness, and the fatigue is more profound than anything in experience.
I am also the queen mother of anxiety. Zanax is a friend of mine. I also have sleep apnea, severe, and argue constantly with CPap. I have had Polymyalgia Rheumatica and Giant Cell Arteritis (PMR/GCA) for 20 years. I suspect the Multiple Myeloma has been smoldering all this time and is why the PMR/GCA could not be brought under control. Before Multiple Myeloma is an illness, it can be a benign condition called MGUS. I have had MGUS for 20 years. Oh, I am also a cancer survivor, Endometrial with total hysterectomy in 2004. Plus two surgeries for reflux, and one 14 day hospital stay to remove the hernia mesh from the hysterectomy. The mesh grew through my bladder wall.
I have spent more anxious days and night over being ill than I care to think about. Every illness I have is greatly worsened when I am anxious. Inflammation, auto-immune, high blood pressure, all worse from anxiety. While anxiety is not a cause, it is a major contributor to what I am dealing with on a daily basis. I have been in counseling for PTSD/major anxiety disorder for over 12 years. I have major panic attacks in rooms with more than 8 people. So, I get it.
Now, with the diagnosis of Multiple Myeloma, I am oddly at peace. At first I asked myself, "Why me?" Then I realized that I was being myopic. There are babies, 2 and 3 years old, fighting deadly cancers. We have a good neighbor dying from acute myeloid leukemia.
So, as they say, I put on my big girl panties, and I deal with it. It is my good fortune to have a fantastic group of doctors. I have friends who care about me and a wonderful husband. I am also learning I am blessed in that I only have to deal with all of this one day at a time.
It is amazing once you start to listen to others and realize; everyone has a story. You are not alone in this. You will be fine. Listen to the wise words of other posters. Diet is a huge factor in slowing down kidney damage. We raise beef cattle. I have not touched beef since last November. I eat a little fish. I learned to make wonderful bean tacos, and am working on homemade beans that taste like the canned ones. It is a low sodium work in progress.
There is a place in your brain that is used to this anxiety/panicky thought pattern. It seeks it out. It feels you need it to function. What advice I give is to trick your brain. Fill that place that seeks the anxiety/panic with different thoughts. Focus all your energy on positive things you can do to baby and care for and pamper your kidneys. Appreciate each and every thing in your life that is good and contributes to your health and well being. Have good doctors or even one good doctor. appreciate them. A loving spouse, appreciate them. Friends who have your back, priceless.
Find a favorite song, or group of songs and listen to them every single day. My favorite right is now is Duran Duran, Ordinary World. A song on grieving. Being ill is also a grieving. A loss of a former way of life, and our constant need to reinvent who we are. "There is an ordinary world I have to find"
Someone once posted: a happy person enjoys the melody, a broken person understands the lyrics. Enjoy the melody, understand the lyrics, Hang in there, you will be fine.
Thank you so much for sharing your story and for your beautiful words.I deeply appreciate it and I wish you all the best with your health.Everything will go fine.Have strength and hope.Thank you very much for the encouragement.🌸
What a special and brave story to share. You are one special and strong human, a true inspiration. I wish you a good comfortable life. Not many people understand myeloma, its very complicated…but my dear friend lived for well over 20 yrs with multiple myeloma ( I think the treatments nowadays had a huge impact), so you keep listening to the music Phemamom and you’ll be fine too, love, hugs and may Gods blessings shine on you xx
I understand the concern you're having. There's a lot of advice being given to you here. I would recommend the following things. 1) Find the underlying cause of your kidney situation. Kidneys rarely fail on their own - something usually is driving it. Diabetes, high blood pressure, autoimmune disorders, polycystic kidney disease, medications, and any number of other conditions that can harm kidneys. You're on the way to do that and this is good because often there ways to treat them. If you may have glomerulonephritis, for example, there are ways of reducing it's impact - perhaps keeping it away for good depending on outcomes. 2) Based on the underlying conditions and the information in your lab reports, ask your doctor or dietician if you should change your diet and, if so, how to do that. Please know it's recommended that many in Stage 3 do not have to change their diet at all unless their lab findings show that their electrolytes are outside the normal range. Yes, the "kidney diet" manipulated key electrolytes which, if you're not careful, can harm other essential organ as well as the bones and more. For example, my hubby is a diabetic. In his case, he needed to remove carbs and sugars (which eventually destroyed his kidneys); not so much the proteins. 3) Bring up your stress and anxiety about your situation with your doctor - this can be your primary doctor. My hubby was calm and accepting of his medical situation, but I was terribly upset. My doctor listened to me carefully and was very sympathetic. He referred me to a number of therapists, singling out a few that he thought would be best for me. He also prescribed a med to that relaxed me and allowed me to sleep. So, please make this a priority for yourself too. Much of what we produce in our mind, isn't reality - its imagination. It's a wonderful thing to round up and control those thoughts and feelings, and put them in their place. Empowering yourself is life enhancing! So there you are - I'm trusting you will come out fine in all of this!
Thank you very much for trying to help and for your kind words.What you said is what I am really so afraid of:that something else is causing my nephritis that is even worse and I really cannot handle the fear.
Don't be afraid. It could well be that your situation is a single or periodic situation from which your kidneys will naturally recover. Then, if not, there are many marvelous treatments available to can stop most things that cause kidney issues - view the steps being taken now to send you in that positive direction. I've gone through many health concerns with my hubby - I honestly thought the grim reaper would take him. And that made my days dark and grim - all for no reason. He is here - doing well! I have great confidence and admiration for our medical professionals. We're truly blessed to be in the 21st century. And I'm certain you will be blessed with many good days ahead, too.
Thank you so much for your encouragement
Follow up from original post. GFR dropped from 30 to 28. First shot of Velcade, no issues. 40mg. of prednisone, still slept fine. Very overheated today, but that is normal with prednisone. No major issues with Revlimid pill. Full dose aspirin okay because it is enteric. Anti-viral to prevent shingles seems to upset tummy the worst. I take a Pepcid Ac, and am fine with it so far. I can do this. The fear ended up being a lot worse than the reality.
Thank you very much for your reply
Undiagnosed kidney struggles
Heart failure. Kidney bloods
Any Advice?
Is this the end of weight-training? Ugh. 
Concerned about kidney function numbers going down
