r/kidneydisease

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I’m 33 years old and have Stage 3A CKD. My creatinine fluctuates between 1.5 and 1.7.

As per my nephrologist’s advice and the usual guidelines, I’m currently taking around 0.8 g/kg of protein per day. Sometimes I go slightly above that, which my nephrologist has allowed.

I’m trying to lose some fat while also building muscle, but I’m struggling with the muscle-building part. I’m not really seeing much progress.

I feel there are probably two main factors here: one is the relatively low protein intake, and the other is that I don’t train very intensely. And obviously, these two things are somewhat related as well.

So I wanted to ask the community—has anyone with CKD experienced something similar? If you’ve managed to build muscle while keeping your protein intake restricted, I’d really appreciate hearing about your experience, advice, or any suggestions that worked for you.

Please share your experiences if you’re comfortable doing so.

Thanks

Hi all. Little back story I’m a 30yr old woman with a 1yr old baby. I went to the ER cause I thought I had a bad flu, turns out I am a complete medical mystery. We’re about 5 weeks into a billion blood tests, scans, biopsies and specialty doctors and still, no one knows what’s wrong. BUT we do know based on my kidney biopsy that whatever it is has been happening for a while and 70-80% of my kidneys are scar tissue. My egfr is sitting right around 30 right now. My nephrologist is hopeful that figuring out what’s wrong could regain me a TINY bit of function but said he expects I’ll probably need dialysis and a transplant in the next 10-15 years. He also wants me on a low sodium and mostly plant based protein diet from now on. And soon (once I’m done breastfeeding) I’ll be going on Losartan and he’ll be putting me on a low potassium diet as well for at least a couple weeks, I guess. My husband and parents have been very supportive which is so great. But idk…I think I struggle cause it’s hard to constantly be told to be positive by people who aren’t personally facing all of this? Idk if that makes any sense. I am also feeling intensely anxious over the food situation. I find myself freaking out about any and all sodium now and if I eat something that I know has sodium I feel so guilty. I think any thoughts, advice, messages of “yeah this sh** sucks” or whatever from people also going through kidney failure could help. Idk what I need honestly, I’m just feelin some sort of way

If you made it this far, thanks for reading 🫶

Just been diagnosed with CKD in the past few months. Have a very unsupportive husband who thinks it’s all in my head and refuses to believe I have it. I’m stage 3B and kidneys are doing ok as of 2 days ago. Am having trouble sleeping and don’t have any support. I try and do what I can but that’s not a lot because I’m extremely exhausted all the time. Feeling very alone and depressed 😔

I never entered remission my whole life

DISCLAIMER: I don't want to scare anyone that wants to go through a kidney biopsy. I'm just depressed on all of the circumstances that happened to me during my hospital stay for biopsy. For context, I (27 M) went to the ER for reoccurring fever for 3 days. During my bloodworks, I found out that I have a creatinine level of 4.5. No symptoms, no signs, nothing. Labs are otherwise normal other than protein in my piss. Doctor scared me by saying that my creatinine levels were at the level of dialysis patients. I have no idea what it meant for me and my wife. I thought my life was already over, but my wife can't accept that. So she looked and we went for a second opinion from a better nephrologist.

The 2nd doctor was far better than my 1st one. He gave good advice, didn't scare me and my wife, explained everything happening to me so far and I was adviced to do a kidney biopsy. I was cleared off Lupus and Leptospirosis. No results were giving us any meaning to my high creatinine so I readied myself and went through with the biopsy. What happened after was so draining.

- They gathered a total of 10 specimens with 4-5 bites. They need to dig a little deeper since my kidneys have a bit of necrotic skin. I could feel a bit of the pressure as they were collecting samples. (Idk the actual amount of bites since I was busy distracting myself (I got local anesthesia))

- The long hours of lying down on a sandbag and not being able to do anything. (Happens to all of us)

- After lying down uncomfortably for so long, I was so excited to piss, just to see that I'm pissing blood.

- Piss gets interrupted by blood clot that formed since I was given medicine for bleeding. I am a male.

- Had a whole day of despair trying to piss because it won't come out. I was going crazy.

- One clot got out after I tried to poop. Got excited, only to be disappointed because it got blocked again.

- I tried my first method again. And again. And again. I can feel my bladder crying and I'm going insane. My hemorrhoids are now popping out.

- They got out. I meant 3 blood clots. All at once. With the size of a chicken heart. From my little guy. I gave birth. Wife said now I experienced menstruation.

- FINALLY PEE.

- Only to get fever due to UTI which I got from not being able to piss.

- Can't move much since the hematoma hurts and the hemorrhoids are out, but hey, I can piss.

- Additional days at the hospital for observation (meaning more money out of our savings)

- Tried to discharge early. Hematologist and Nephro gave the go signal since I don't piss blood anymore.

- Got discharged, price is no joke (we spent 100% off our savings + loans because healthcare is bullshit in my country)

My hematoma still hurts a little but what hurts more is the thought that I drained everything. I have a follow-up check up once I get my biopsy results. I'm sad for my wife. I know she's exhausted too. I'm mad at myself and I'm trying to be strong. I'm depressed, broke, stressed, anxious, and in debt

I wish I can do more for the people that took care of me. I know my condition is not determined yet and I know there are others suffering way worse than me. I just feel down.

I wish things were better. For me. For you, reader. For all of us here.

A couple of years ago, I had a stroke that put me in a coma for two weeks. Fortunately, I have had a full recovery from the stroke, with no residual problems.

For about seven years before I had the stroke, my creatinine had consistently been in the 1.9-2.0 range. However, my hospital chart showed that, during the coma, my creatinine was around 1.5. It has since returned to pre-stroke levels.

Does anyone have any theories as to why having a stroke/being comatose was so good for my measured kidney function? I would like to know the answer to this question, since I would like to replicate those lab results --as long as it does not involve having another stroke, or again being comatose for two weeks.