Good morning, I’m very new to this site but I have been diagnosed with ckd stage 3b. I discovered it myself when I got a copy of my blood work. I also went to a neph where I saw a lnp who is taking the approach of watch and wait. She did 1 urinalysis which showed no protein in urine. I also have a 103 level of parathyroid hormone on my blood work result. She also said not to add salt to food and discontinue ppi. My next appt is in 6 months. I feel totally alone in my healthcare journey. I’m researching and being proactive because I don’t want to end up on dialysis. The only other test besides blood work and urinalysis was an ultrasound which showed 2 very small cysts on 1 kidney which no one is concerned about. Should I see a kidney nutritionist and how do I find a good one? Should I see a different neph? Thank you so much for your help. I’ve been reading posts and answers and they are very helpful to me. Have a blessed & healthy day.
Ckd 3b: Good morning, I’m very new to this... - Kidney Disease
Ckd 3b
Hello Hello..
Yes, if you can find a dietician, please go see one. Changing up my diet made all the difference. You do not mention if you have high blood pressure or diabetes. These issues need to be tackled as well. It is not uncommon for nephrologist to dismiss stage 3 but there are other nephrologists who like to be proactive and help you stay at stage 3. So maybe shop around and find one who is more willing to assess your whole self. Not sure what ppi is that you mention.
Thank you so much for your reply. Yes I do have high Bp and am controlled with lisinopril which they say helps kidney disease.my bp has fallen since I’ve lost weight & lisinipril has been reduced. I have changed my eating plan quite a bit, but not gone all plant but eat very little chicken & fish. I hope I can find a good dietician. I will also look for another opinion from a nephrologist. Again thank you for your guidance.
Ppi is stomach med, lansoprazole
How long had you been taking a Proton Pump Inhibitor?
I was taking it for 10 years until I finally found out that it can cause kidney damage so in Dec 2021 I stopped taking it. Thank you
Maybe Doctor can find a substitute medicine?
My nephro lnp said to use Pepcid. I try not to take it too often though. Thank you for your reply, I appreciate all of you and your helpfulness. I don’t feel as alone now.
You are Welcome. That is what we are here for on this forum , to support one another on this CKD journey.
I have PPI damage to and its rare. I crashed to 8GFR and am now 26 and apart from being bit tired all is well. I was advised not to worry about diet as its an injury and no low salt, salt either but be careful with ordinary salt. I'm not able to say much more as these things are complicated and I'm in UK . Drink water and no more PPI's and as Ranitidine is no longer available its difficult for some. I'm lucky as no need to worry as I don't have indigestion but the PPI was used as a stomach protector from another medication which was also stopped. Be careful with some over the counter products as they can also be part of the PPI family and without the protection of blood tests to detect damage.
PS I only took it for a few months and the blood tests were done regularly. I spent weeks in hospital undergoing tests no high blood pressure not diabetic just had Rheumatoid Disease and was very lucky to survive the PPI damage.
Thank you, medway-lady. I’ve never heard of that kind of damage! I’m so glad you’re better now. You’re so young! I’m so sorry you went through that scary experience.
No my GFR is 26 I'm older and so being 26 is a memory. lol
lol my youth is also a distant memory.
Hello, I have some issues after PPIs as well. Do you experience foamy urine despite negative urinalysis?
Thank you.
If that is a question for me foamy urine can be anything or usually nothing. I didn't have any symptoms at all. Just a routine blood test and a phone call to say go to hospital by my RA doctor.
Watch diet. Control BP
Manage diabetes (sugar, carbs)
Treat infections quickly
Lose weight
Exercise
No NSAIDS (ibuprofen, aspirin)
Stay hydrated
Low salt, no salt substitutes
No dark sodas, energy drinks
Lower protein in diet
Ask Dr about US and cysts
Parathyroid level over 100 isn't too concerning unless phosphorus and calcium are imbalanced.
Watch potassium (red meat, potatoes, orange juice, tomatoes, melons etc) 0
Limit processed foods
Lower stress
No over the counter meds unless doctor approved
Limit phosphorus foods (Dairy like milk, cheese, yogurt, ice cream, chocolate, nuts, chili, biscuits, hotdogs, creamed soups, pancakes, waffles, peanut butter, organ meats etc - ask dietitian)
I see you are in UK, so getting dietitian referral from Dr., or hospital is encouraged.
These are only suggestions to help you on your journey. Everyone's diet differs so input from dietitian per lab values is key. Do you know your eGFR? Age also can play a role. Being proactive is great. Wishing you well.
Blessings
Thank you but I've had a Consultant Nephrologist since Oct 2018 when the injury occurred he advised me as its an injury and no health issues (apart from controlled RA) nor overweight so no need to diet just avoid grapes, bananas and baked beans. I see him regularly every three months now but it was weekly etc and am very well with a GFR of 26 so its improved a lot. In the UK the route to a Nephrologist its via the GP or A&E or like me following a sudden and unexpected injury discovered by a routine blood test. I think if overweight then a dietician is great but otherwise your information isn't really applicable to me as my lab results are great and as he said "if I hadn't done the biopsy and know your kidneys aren't working I'd not think anything to worry about. Potassium, Magnesium etc are all in the normal range". The Renal Dietician is available to talk to anytime along with the Renal Pharmacy so I'm very well looked after. I do have the pANCA gene and have also seen an expert in Auto immune Diseases but the AKI was not related. My case is subject to action so I've also seen a Barrister who specialises in medical injury cases.(very posh he was too !) xx
Thank you so so much for all of the valuable information! You told me more than my neph lnp! I will take your suggestions to heart and have already started implementing some of them My specialist said there is no reason to change diet, she said that’s old school. I find that hard to believe. My GFR is 38 as of Dec 2021. My phosphorus, bun, Utica acid, calcium, & albumin are all within the normal parameters.
Thank you for giving me input on the parathyroid number too. I couldn’t find out when they typically treat the condition. She just said it was related to the kidneys.
What concerned me and caused me to research was my stage went from a 3a to 3b in just over a year. I found that to be alarming but no health care provider did. lol
I’m in the US, I tried to put that in on my profile but will have to try again. I’m sorry I messed that up.
Have a blessed day and thank you very much.
Mine also went from 3a to 3b in 1 year and they don't know why. If you need to replace the PPI, try taking baking soda (1 tbsp 3x/day) because that is also recommended by many doctors to help improve kidney function. It alkalizes your blood and too much acid can make CKD worse.
Starcatty, I didn’t know if I could take it because of sodium. You’re right it does work. Thank you so much.
Sodium is low, creatinine is high. Sorry left those out.
Have you had your bones scanned for osteopoenia / osteoporosis?
What happened to you also happened to me...alarming drop in eGFR. I thought it might have been my blood pressure medication but now I am sure it has to do with loss of bone.
Previous time I had blood work (about 6 months ago) my eGFR was 37. I just had blood work last week and my eGFR is now 41. The correlation is that I started taking Ibandronate (generic Boniva) about 4 months ago.
So it might be worth it to request a Dexa scan to see how your bones are doing.
Good morning PecanSandie, That’s very interesting, I would have never connected bone scan to kidneys! My last bone scan showed osteopenia. Do you see someone who specializes in bone health or is it managed by reg gp? I will look into Boniva. Thank you so very much. Have a blessed day!
My GP recommended that I see an endocrinologist when my osteopenia was on the border of osteoporosis. I was already seeing an endocrinologist for a thyroid nodule and there is a doctor in her office who specializes in osteoporosis so I went to see her. She prescribed the Ibandronate. I cleared it with my nephrologist (because some of the medications for osteoporosis and not good for people with kidney disease). I do realize that correlation does not imply causation but at least the eGFR is going in the right direction. I also take synthetic vitamin D (calcitriol) which might be helping too.
Just a warning - Ibandronate is not a drug to take lightly because once you start it becomes a process if you want to stop taking it.
Thank you for sharing your story. I have thyroid disease due to removal of large nodule & isthmus some years ago. I don’t see an endocrinologist these days. I should probably find another to see. My old dr retired. You’ve given me some very important information to look into. I won’t be too quick to start treatment but will speak with the specialist. Thank you. I appreciate all of you on this support site.
Just wanted to add a little more. I went to my primary care doctor today for a follow up visit after the blood tests. She said it was great that my kidneys were improving and I was no longer in the anemic category. So I said that it looks like the Ibandronate is working. And she says....wait for it.....the ibandronate has nothing to do with my improvement. It's all because of what I am doing .... except I am not doing anything different from when my eGFR was at 33. So, now I really can't figure out what's going on!!!😜
Oh my goodness, that is very confusing. I wonder if it’s the prescription vitamin D? Can it improve kidneys? I know it treats the parathyroid hormone. Sometimes I think healthcare professionals just don’t connect the dots. Thank you for letting me know. Congratulations on your improvement! Maybe prayer?
If you figure it out, pls let me know .😊
Have a blessed night.
All good advice but do your own reading on diet. Make sure you google all the drugs you are taking as well, to see if there are negative effects on the kidneys. If you don't like your nephrologist get a new one. They should be telling you all the info you need. Dietitians are great they should help by reading your numbers and advising diet restrains. It's alot to digest but it's worth knowing. Good luck and don't worry, be proactive in your care.
Definitely take your own health seriously...it frustrates me so much when a lot of the medical personnel just let you continue to go downhill without any early intervention!
Hi,
It's way too soon for you to be worrying about dialysis. That is NOT in your immediate future at Stage 3b.
As others have said, you still have plenty of time to turn things around or maintain where you are.
Watch what you eat to avoid needing Pepcid or other meds.
Read as much information as you can about kidney disease.
Check out kidneyschool.org/mods/ Read all the modules. You will learn a lot and see where you are in the scheme of things.
Also take a DaVita online web class, it's free and you can talk to the teacher/RN and ask questions that are of concern.
Educating yourself will keep you from being afraid.
Many like myself don't get referred to a Neph until we are Stage 4. I have autoimmune disease so diet can't help me, but you can control your other health issues and eat a plant-based diet and improve your numbers when you go back in 6 months. Be sure to drink plenty of fluids, being dehydrated can make your numbers lower. Being seen in 6 months is a good sign, when the Neph asks to see you every 3 months or every month you know you aren't doing very well. You are still doing okay.
If you don't like your Neph or trust them, find a new one, but they aren't going to be alarmed about Stage 3. The majority of their patients are Stage 4 and Stage 5. I know stage 3 sounds scary to you, but it is a manageable stage, and many would happily swap places.
Best of luck, keep educating yourself. Knowledge is power. Empower yourself and you won't be afraid or feel alone.
God bless you for your encouragement even in light of your own situation. That is love. You’ll be in my prayers tonight.
Thank you Sophiebun11 for the encouragement. You are right, I’m blessed and glad that I’m being proactive so that I have an opportunity to stop kidney damage at this stage. Thank you so much for the education link and the info about the class. You’re so right about dehydration too. I have increased water intake and will increase it a bit more. I am adding lemon to water bc I read that it actually helps kidneys. What stage are you in? I’m thankful that I don’t feel alone any more bc of the support of all of you on this site. Have a blessed day.
I’m sorry, you are in stage 4? You will be in my prayers. You are very kind. I didn’t get referred to a neph but I found one and made my appt bc I do want to stop progression. I’m so sorry for your situation. 🙏🏻
Thanks, but I'll be ok for a long while in Stage 4. No worries until I hit Stage 5, even then it could be years until I'd need dialysis. I have my autoimmune system attacking my kidneys so the timetable is hard to figure but I'm not a worrier. What will happen, will happen whether I waste time worrying or not.
I'm glad you feel better after hearing info from everyone here.
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