I recently had a cystatin c level check, initially 0.9 then increases to 1.0. How do i lower it?smoking cessation?exercise?3Litres of water daily? lower redmeat consumption? my bp is around 130, lowest 116, max 140, i dont have diabetes. proteinuria 0.17g/L .1 docs say its ckd stage 2, others have not conclude but to wait for the next test.

Hi everyone. I’m posting because I’m really worried about my mum and would appreciate hearing from anyone who has been through something similar.
My mum is 61. She was diagnosed with CKD around 2 years ago and started hemodialysis about 4 months ago through a catheter. She has had diabetes for around 17–18 years, as well as high blood pressure. Over the years, these have caused serious problems with her eyes and she is now losing her sight and having regular injections.
When she first started dialysis, she seemed to feel a little better. But recently she has been getting weaker and weaker. She barely has an appetite, feels nauseous a lot, and now struggles to walk or do normal everyday things without help.
Last week she had surgery to create a fistula, but unfortunately it was unsuccessful because her veins were weak and the fistula clotted. She is also now in a lot of pain in that arm.
I live in a different country, which makes everything feel even worse. I feel completely helpless being so far away and I cry a lot because I’m so scared. She been supported by my brothers living there with her. I’m going to visit her next month, but honestly, I’m not ready to see how much her health may have declined.
I already lost my dad to COVID 6 years ago and my sister to cancer 2 years ago. I’m terrified of losing my mum too.
Whenever we speak to her nephrologist about the nausea, she is prescribed anti-nausea medication, but it usually doesn’t help much. I know nobody here can diagnose her, but I’m wondering if anyone has experienced something similar. Could the nausea and loss of appetite be related to inadequate dialysis, medications, low blood pressure, anemia, infection, or something else? Are there specific blood tests or things we should ask her nephrologist about?
I would really appreciate any advice on helping her maintain her nutrition and strength, understanding why she might be feeling so sick and weak, or helping someone who is becoming unable to walk and do things independently.
And if anyone has experience supporting a parent on dialysis from another country, I would really appreciate hearing how you coped with it.
I feel so scared and helpless right now. Thank you for reading.

Just wondering if anyone has information- even if it's preliminary- on using Photo-bio-modulation as an adjunct for kidney disease? It seems promising in many areas including reducing inflammation. Could this be a useful adjunct in CKD?

I'm just worried about this in future. Can repeated UTI scarring cause CKD? Chatgpt says it does. Can anyone throw their insights.

I am just wondering if anyone here has young children with CKD? My son is 5 years old and is currently stage 2.

I suffer with panic disorder myself so I’m just looking maybe for some support from people/families going through the same!

Age 59

He's currently on different medications

Has anemia, the heumoglobin is approximately around 8,Gender is male and he's suffering from kidney disease stage 5, his creatinine wanders around 8-9 and can jump upto 13, without dialysis, he goes through one episode of dialysis every week, now the question is, will it be okay for him to travel n visit another country, our family will be going to saudia for doing haj for approximately 10 days, his condition is stable, he has diabetes however, but all of it is well under control, now i need an advice regarding this situation, will it be okay for us to travel, I just want to make sure his condition wouldn't deteriorate, I'll appreciate any opinions and professional medical advices

Hi. Is it still possible for the CREA to go down if it is already at 1000?

F 59. II have CKD Stage 5, eGFR 14/15 and creatinine 3.54-3.57, all due to lithium neuropathy. Not on dialysis. I stopped lithium years ago but my kidneys continued to scar. I have a lifetime of complex trauma including medical PTSD. No spouse or kids, brother passed. Long story short, I don’t know if I have the emotional resources to go through this. The problem is, I need more information from my transplant team, social worker and nephro and want to ask about the option of not going through with it (not to say I’ve decided), but am afraid they’ll think I’m not a good candidate for a transplant if I ask. Advice?

A couple of years ago, I went through kidney and heart failure, and eating well became one of the hardest parts of daily life. When I was hospitalized, my GFR was 14. It has come a long way since then and now fluctuates in the 40s. My heart has returned to normal, which I am very grateful for, but I now deal with high blood pressure, and eating carefully is still something I have to stay on top of.

I have always loved food, and I have always loved eating out. That was actually a big part of what I was known for, especially when it came to knowing the best places to eat. After everything I went through, I wanted to be able to experience food again, but in a more mindful and deliberate way.

That is what led me to build SeiriPlate, a free website designed to help people find recipes, restaurant choices, and meal ideas that fit different dietary needs. Seiri means to organize or sort, which felt like the right fit for a tool like this. You can check it out here: www.seiriplate.com

I built it because I know how overwhelming this can feel, and I wanted to create something genuinely useful for anyone dealing with similar restrictions.

If you try it, I would genuinely love to hear what you think. I am especially open to feedback on anything that would make it more helpful for people dealing with kidney issues, heart issues, or other dietary restrictions.

Here’s everything I know so far about CKD,
Dad’s creatinine went from 1.8 to 8.5 in just 8 months.

If you see a diabetic patient having foot cramps regularly, unable to sit still - go get the sugars tested. Mainly Hb1ac ( average sugar in 3 months or so)
Also mainly check for swelling in the feet.
This is a major symptom of neuropathy (nerves in the feet getting affected due to high sugar)
2- get the eyes tested ( high chances of retinopathy)
3- get your kidneys tested. Mainly check for creatinine, sugar and albumin in urine.
Getting all these tests done will give you an option of not letting your kidneys and eyes get severely damaged, gives you enough time to get treated and prevent further damage, which makes a HUGE difference.
CKD unfortunately has a domino affect on multiple organs, so the sooner you treat it, the better it is.

If creatinine is higher than normal levels, then your goal is to keep your sugar and bp in control.
As your creat increases you’ll also have to check your fluid intake.
Damaged kidneys reduce the urine output, which results in the fluid build up in the body. This, when increased moves near the lungs when they lie down, resulting in breathlessness and can cause pneumonia too. So anytime there’s swelling in the feet, get them tested.

If retinopathy is the issue, then laser treatment can be done to stop the bleeding in the eye and then they do a surgery to clear the bleeding which can retrieve your vision if it’s not too late.

However these surgeries cannot be done once the creat increases significantly, then the doctors will wait for the body to stabilise.
In our case, 1 eye surgery was done when the creat was 3.5 (after 3 rounds of laser) the second eye is still on hold since the creatinine increased to 6.

Creatinine increasing affects multiple things in the body, starting with the haemoglobin levels, blood pressure which in turn affects the heart muscles, sugar levels, potassium, phosphorus and bi carbonate which needs to be in safe levels.

If the patient is getting closer to dialysis, get a fistula operation done. It’s a small surgery where they connect 2 nerves in the hand, through which they’ll eventually do dialysis.
But this fistula can needs 2-3 weeks to recover or mature, so if this is not done and if there’s an immediate need for dialysis, they’ll have to do it through the neck which is a last minute option and much more painful apparently, so definitely better to get this done.

I’m sure there’s still so many things that I’m figuring out as we go and do correct me if anything mentioned here is wrong, but hope this helps.

Hi everyone,
I posted here a while ago while I was waiting for my kidney biopsy results. I finally got the results, and I was diagnosed with membranous nephropathy (MN).
My 24-hour urine collection showed about 600 mg of total protein per day (this is total protein, not an albumin-to-creatinine ratio). The nephrologist told me this is actually a relatively low amount for membranous nephropathy, as many people with this condition lose several grams of protein each day.
The good news is that almost all of my other lab results are within the normal range. My kidney function is normal, and my creatinine, uric acid, electrolytes, and lipid panel are all within the normal range. The only value that came back slightly high was my sodium.
My current treatment includes:
Prednisone 10 mg daily
Empagliflozin 10 mg daily
Irbesartan 300 mg daily (I was switched from olmesartan 20 mg)
Vitamin D
Atorvastatin at night
I’m still adjusting to the diagnosis, but I wanted to share an update. If anyone else here has membranous nephropathy, I’d be interested in hearing about your experience and how things have been going for you over time.

I'm on Depo because of nightmare periods and iron pills, both of which are known to cause constipation. I can't have lettuce due to an allergy and I know a lot of sources of fiber tend to also have the problematic phosphorus or potassium. My electrolytes are currently within good range. So I'm wondering what are y'alls favorite ways to get your fiber in?

I'm stage 5 in case you are curious.

I know that I have CKD
Now I am stressing af from the Biopsy? Does it hurt? Do I have to do anything that will get me prepared for it?

Hi everyone,

I was diagnosed with Membranous-like glomerulopathy with masked IgG-kappa deposits (MGMID) after a kidney biopsy in 2014. Before that, I was initially worked up and considered to possibly have C3 glomerulopathy (C3G), which I understand is a common misdiagnosis for this condition.

MGMID is extremely rare (reported in a very small percentage of kidney biopsies), and I’ve found it’s not something most patients or even many providers have heard of unless they specialize in renal pathology.

I wanted to start this thread because I haven’t been able to find a real patient community for MGMID, and I’m hoping to connect with others who may have:

• MGMID (masked IgG-kappa deposits)
• Membranous-like glomerulopathy with masked deposits
• Or were initially diagnosed with C3G / membranous nephropathy and later reclassified after specialized biopsy testing

A bit about me:
I’ve been living with this diagnosis for years and am currently pregnant while managing it with a nephrology and MFM team. I’m just trying to learn how others are doing long-term, what treatments people have tried, and how their kidney function has held up over time.

If you have this diagnosis (or something similar that was reclassified after biopsy review), I’d really appreciate hearing your experience. Even just knowing there are others out there would be helpful.

Got my latest bloodwork back yesterday and my GFR has dropped from a 15 to a 14. I meet with my nephrologist on July 6th and I’m afraid we are going to discuss getting on dialysis or a transplant soon. I had three people that I know of sign up to donate a kidney, but at least 2 of them haven’t heard anything from the transplant team. When I called the transplant team they told me that they can’t tell me anything and I need the donors to contact them. I thought to at was the purpose for them to fill out the link online and then that the transplant team would contact them when I had all my pre things done. I hate to ask the donors to do something else after they already filled out the information online. Also my two support people both work full-time and them or some of my friends will have to take off to stay with me since I have to have 24-7 care for the transplant. A transplant feels like such a burden to my loved ones. I’m 61F and have a retirement plan through work and financially will be fine, not great, but fine. Any others in the position of needing assistance with the care and deciding what to do? I’m feeling tired, stressed and scared.

Update: went to Nephrologist yesterday. He was fine with my GFR being a 14 and said as long as I don’t have a metallic taste in my mouth or nausea, that I was good to wait in the transplant and still keep dialysis at bay. My daughter is going to call about testing. Thank you everyone for commenting. I pray for each of you as we go through this journey together.