New here, concerning decline of GFR - Early CKD Support

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New here, concerning decline of GFR

greywolf_84 profile image
6 Replies

Hi all. Completely new here and only recently visited consultant at nephrology.

9 months ago I was experiencing severe full body muscle cramps and swelling of hands and feet so went to doctor. After various blood tests just got told my kidneys were working but not quite right. Months went by with regular blood and urine tests with just the same thing being said 'your kidneys are working but not quite right'

After seeing consultant I found out my GFR was 53 in September and has been on a downward trend down to 31 at last blood/urine test.

My consultant is really good at first view and put my mind at rest. I'm awaiting an appointment for a kidney biopsy so they can tell the extent of damage and then work on treatment plans. I've had an ultrasound and structurally my kidneys are fine.

More recently I'm finding the fatigue is taking over my life, the nausea and vomiting is becoming more frequent and now my urine is consistently foamy. Getting concerned about everything tbh, will be seeing my gp this week to discuss Things with him.

I'm a 32yr old male, in relatively good health, no diabetes, blood pressure is normal too.

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6 Replies
Nicolala profile image
Nicolala

Hi greywolf

Your symptoms sound similar to mine. There are various types of kidney disease. The foamy urine you describe happens when the kidneys leak protein. Protein is a small molecule so it is often the first indicator of kidney disease- causing swollen ankles, a puffy face when you wake up etc. The muscle cramps are happening because fluid is not maintained in your bloodstream or muscles, but leaking into your tissues, hence swollen ankles. Nausea, vomiting and especially fatigue are all symptoms typical of kidney disease, especially if your creatinine or urea levels are high. I have FSGS, a type of nephrotic syndrome. I cannot say if you are suffering from a similar thing or not, but your doctor may be able to shed more light on what is happening. Feel free to ask any questions. I'll help if I can.

Kwesley profile image
Kwesley in reply toNicolala

I am wondering if you could tell me how you were diagnosed and if your GFR is lowered as a result of your issues. I have been having very similar symptoms and a drop in my GFR but still considered normal. I had two Ct scans while pregnant become they thought I had pulmonary embolisms. Thankfully didn't but I am very scared my kidneys are failing due to my symptms. And wondered if it could be the case and still have somewhat normal creatinine levels. My last one was .75. My symptoms have been muscle cramping and weakness, nausea, stomach cramping, severe fatigue, metallic taste in mouth. Flank pain on both sides. Sometimes my urine is completely clear and seems to be much more volume then normal.

I am really frightened that I am having renal failure but for some reason it hasn't shown up in blood work. At one point for about a week my creatinine leek jumped up to 1.4 but then came back down to between .7 and .8 the next two times it was check at the ER.

greywolf_84 profile image
greywolf_84 in reply toKwesley

Hiya Kwesley, It took 9 months of gfr declining before I got to see a consultant who diagnosed me with stage 3b. I started having blood tests to check everything out because of swelling in hands/arms/feet and an episode of full body muscle cramps.

I've had an ultrasound on both kidneys and they're structurally fine, and just over a week ago I've had a biopsy on my left kidney which im.still awaiting results on. From recent blood tests my gfr has stabalised at 33 and appears to be holding at that for the moment.

They've a couple of theories on what I could be that's causing the kidneys to decline but nothing is confirmed as yet. It's all a matter of regular blood tests with urine tests so they can get more dots on the graph to track the condition.

Keep asking the docs to show you the results and ask what your gfr is. Push for answers with them. If your doctor won't do anything ask for a referal to a nephrologist. I hope they can get things sorted for you

Kwesley profile image
Kwesley in reply togreywolf_84

Thank you so much for replying. I am so sorry you have been dealing with medical issues as well. Good health is beyond the most valuable thing to have. I am seeing a nephrologist on Monday and hoping he can help me. Sending good vibes your way take care

rabbit01 profile image
rabbit01

Hello and welcome to this forum which I hope you find useful and supportive. I know I do. Sorry to hear you are facing this. It sounds like we are similar except I am older than you. About two and a half years ago, when I was 48 I was diagnosed with CKD. I don’t have any of the normal causes so the docs have no idea why I got it. I suspect it was due to some antibiotics I had for a chest infection in October 2014 as I never felt right after taking them. At the time I was diagnosed my GFR was around 21% and has been falling steadily over the last 27 months and is currently at 15%. I am constantly tired and sick especially in the mornings and my wee is foamy. The latter is due to something called Proteinuria which is where there is quite simply protein in the urine which is due to our kidney problem. I did not have a biopsy as in my case it was too late to implement any medication and the kidney consultant did not think it would do any good other than possibly show what caused the problem. The progression of your CKD looks to be much faster so whatever is damaging you kidneys (probably an autoimmune issue) looks like it is still active and hopefully can be stopped.

Bunkin profile image
Bunkin

Hi and welcome! It's good you are being proactive about this and also not diabetic or hypertensive😀 It is possible, no matter what caused your kidney problems, to be able to reverse or at least maintain. I would start to take action now rather than later as far as your diet, exercise and supplement the best you can. All are very important and can go a long way to help you. You are in my prayers. God can do anything!!

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