Kidney disease at 40 years old

[bookworm1982]

Hi, I know this should go onto the Health board but I wanted to try and get a few more responses. I’ve just been diagnosed with kidney disease stage 2. I’m forty years old. Does anyone out there have this or know some with this? According to the research I have done, being diagnosed with CKD stage 2 at 40 means you have life expectancy of 30 years, which leads me to 70. I know some people have very short lives (my dad died at 40), so I should be grateful to get this far (if I do), but it still freaks me out a little.

I’m just looking for advice and reassurance from anyone with experience.
Thank you so much xx

Bump

Sorry to hear this op. It must be daunting

Can I ask what were your symptoms and do they know what causes this to happen?

I'm no expert, but my family has a history of kidney disease, my sister very severe - she was operated on numerous times as a child, and wasn't expected to survive to adulthood. Well, despite having the worst lifestyle habits you could imagine, excessive drinking, smoking, crappy diet, does nothing to take care of herself, she's currently at 58 and going strong.

DH was diagnosed with this when he was about the same age a few years ago. It was a scary stressful time but we're much calmer about it now.

The medical care has been very good and his kidney function is holding up really well. The doctors were very confident his life expectancy shouldn't really be affected but that he may need dialysis by the time he was in his 70s. The way we've looked at it has been that there will likely be so much progress in 30 years that we have no idea what they'll be capable of doing by then.

He does need to keep on top of his diet and exercise but that's been good for him anyway. His kidney disease was related to high blood pressure though so that might not be relevant to you.

Best of luck, I hope you have some support around you

PS Make sure you get a flu jab, DH wasn't aware he was eligible until Covid came along and he was classed as vulnerable.

Hey op. There can be lots of underlying contributors (diabetes / high blood pressure) that would surely skew life expectancy. Also I read the 30 yrs is for men. 34 for women. 80 is average so it's not far off that.

Don't get me wrong, it's shit and it's terrifying. But don't let it steal away your spirit. Fight this every step of the way. Eat well, sleep well, take up something physical (yoga every time for me). Look this diagnosis in the eye and say "you are not taking any years off me, you are not taking my spirit, you are not taking my peace of mind."

If you can get referred or afford private, counselling might help. I really think you have to look after the mental as much as the physical.

Hiya I'm in the same boat, a bit annoying since I have no idea why - no risk factors. COVID has been shown to damage the kidneys so I wonder if there will be more of us showing up with some damage.

There's new research that switching to plant protein is protective to the kidneys. At stage 2 we don't have to worry about any of the potassium levels etc. So get great veggies into your diet.

Thank you everyone for your replies. Just some further info:

I have an eGFR of 76 ml/min
My creatinine is currently at 84umol/L
Protein detected in a urine sample was 20.9mg/mmol

The doctor (Bupa) that I have been seeing wrote in a letter to my GP that he suspects the underlying cause could be IgA Nephropathy or Thin Membrane Disease - have Googled both and can't really suss out how bad this is!!

I do not have high blood pressure or any other symptoms, other than a little blood detected in my urine which I've had for years.

@BigGreen

Hiya I'm in the same boat, a bit annoying since I have no idea why - no risk factors. COVID has been shown to damage the kidneys so I wonder if there will be more of us showing up with some damage.

There's new research that switching to plant protein is protective to the kidneys. At stage 2 we don't have to worry about any of the potassium levels etc. So get great veggies into your diet.

That's interesting re Covid. I have had it twice.

You seem not too scared about having CKD. Do you think I shouldn't be so concerned?

Are you 40 too?

@Winecheesesleep

DH was diagnosed with this when he was about the same age a few years ago. It was a scary stressful time but we're much calmer about it now.

The medical care has been very good and his kidney function is holding up really well. The doctors were very confident his life expectancy shouldn't really be affected but that he may need dialysis by the time he was in his 70s. The way we've looked at it has been that there will likely be so much progress in 30 years that we have no idea what they'll be capable of doing by then.

He does need to keep on top of his diet and exercise but that's been good for him anyway. His kidney disease was related to high blood pressure though so that might not be relevant to you.

Best of luck, I hope you have some support around you

PS Make sure you get a flu jab, DH wasn't aware he was eligible until Covid came along and he was classed as vulnerable.

Thank you. And that is a very good point re progress in the treatments in 30 years time xx

@mbosnz

I'm no expert, but my family has a history of kidney disease, my sister very severe - she was operated on numerous times as a child, and wasn't expected to survive to adulthood. Well, despite having the worst lifestyle habits you could imagine, excessive drinking, smoking, crappy diet, does nothing to take care of herself, she's currently at 58 and going strong.

Thank you. I am glad to hear she is still going strong :)

I'm 40 too. My egfr is somewhere around 62, 76 is really good! I don't have protein in my urine so I'm not sure about that aspect.

Tbh the NHS only does agonises ckd with results under 60 and evidence of decline. So I don't have a diagnosis but regular monitoring. It's great that your Dr is getting on top of it, since you've got the chance to preserve function.

I am concerned about it in terms of switching to a vegetarian diet with mostly plant based protein, plus I've hugely lowered my alcohol consumption. I took a really great free class with Jess Savile kidney RD which is an American company. I didn't use their services but May in the future. It's a helpful crash course in emerging research on the power of dietary changes.

I was diagnosed at 32
I have Nephrotic Syndrome, IGAN and FSGS

You really cant base having stage 2 kidney disease on how many years you have left
You could stay stage 2 for the rest of your life

A eGFR of 76
And creatinine of 84
Is VERY GOOD

@DidWeHaveAWinter

I was diagnosed at 32 I have Nephrotic Syndrome, IGAN and FSGS

You really cant base having stage 2 kidney disease on how many years you have left
You could stay stage 2 for the rest of your life

A eGFR of 76
And creatinine of 84
Is VERY GOOD

Thank you. I see what you mean. I think the main concern isn't the fact that I'm at CKD stage two, but why I declined so quickly (I was at egfr 80 a year ago) xx

@BigGreen

I'm 40 too. My egfr is somewhere around 62, 76 is really good! I don't have protein in my urine so I'm not sure about that aspect.

Tbh the NHS only does agonises ckd with results under 60 and evidence of decline. So I don't have a diagnosis but regular monitoring. It's great that your Dr is getting on top of it, since you've got the chance to preserve function.

I am concerned about it in terms of switching to a vegetarian diet with mostly plant based protein, plus I've hugely lowered my alcohol consumption. I took a really great free class with Jess Savile kidney RD which is an American company. I didn't use their services but May in the future. It's a helpful crash course in emerging research on the power of dietary changes.

What do you do about alcohol? I hardly drink but I'm away for the weekend. Am I ok to drink a bit of Prosecco? Xx

@BigGreen

Hiya I'm in the same boat, a bit annoying since I have no idea why - no risk factors. COVID has been shown to damage the kidneys so I wonder if there will be more of us showing up with some damage.

There's new research that switching to plant protein is protective to the kidneys. At stage 2 we don't have to worry about any of the potassium levels etc. So get great veggies into your diet.

Thank you. We're not quite for why for me either. I don't have a high blood pressure or anything. I think it's from years of popping too much NSAIDs (I have endometriosis so I get crippling period pains, ibuprofen has been my pain relief for 25 years!)

Thanks everyone for your reassurance. I'm going away for the weekend now so looking forward to getting it out of my head for a few days!

Does anyone know if at stage 2 it's ok to drink alcohol? Don't get me wrong, I rarely drink at all, but this weekend there'll be a bit of Prosecco flying around

as a previous poster has said, the NHS doesn't tend to officially diagnose until CKD stage 3. I'm in a broadly similar position to you (in my 40s) (but do have high blood pressure). Btw IME the protein in the urine isn't necessarily permanent - I've had it once, but never again in repeat testing. I wouldn't worry about having very occasional alcohol. Impression I got from my reading about it - is that the risk of having relatively mild kidney issues isn't so much of it getting significantly worse, but in terms of raising risk of general cardiovascular issues - so yes, pay attention to diet/exercise etc, but don't worry overly at the moment about the EGFR reading being a bit lower than it should.

Hello - I'm in a similar boat - just searched the forum and arrived at this thread.

I'm just in the process of getting a firm diagnosis and seeing my nephrologist on Thursday next week to go through his findings.

I'm 34 and ended up in A&E end of March with an infected cyst on my kidney, found I have a few on each, consultant doesn't think it's PKD though, maybe some other variation. I haven't felt right since my now 3 year old daughter was born, had trouble keeping my iron and vit d levels up so this makes a lot of sense now. I've had a lot of bloods done over the course of a few years at the GP and always asked why my eGFR was that of a 70 year old woman and always got fobbed off. They don't seem to care unless you are at 40 GFR. I had a decline of 10 points from 80-70 in a year as well. Not sure what it is now, guess I will find out on Thursday. Still in pain from a large cyst on my kidney, also not sure the infection has cleared up either as pain coming back now.

Haven't really got my head round it truth be told - no family history and no risk factors. I did have gestational diabetes in my last pregnancy but I think that was because I have dodgy kidneys rather than it being the cause of the dodgy kidneys if that makes sense.

I have also had random episodes of trace blood in urine throughout pregnancy that was never investigated and have it almost constantly now (I'm getting a bit dip happy now with my dipsticks and need to stop really!)

Worried I've passed some dodgy genes onto my kids although my mum is an alcoholic and I can't be 100% sure she didn't drink throughout her pregnancy with me and I've read that is a risk factor. I will never know and probably just need to put that thought to bed but it's oddly comforting to think if that is the case then at least my kids will be ok.

Hi Lolacat1234, This does sound similar. Especially as my iron and fit D levels have also been low - was put on iron supplements but am off them now, just taking the fit D ones now. I don't think I have had any cysts on my kidneys though, and I had a scan about 18 months ago.

I always thought the traces of blood they found in my urine during my pregnancies (and now) was due to the fact that I have endometriosis on my bladder and it gets irritated, but the nephrologist doesn't seem to think it is.

The next stage now is to find out why I have CKD, and if it's the CKD that's causing blood in the urine or something else. I'm having more blood tests done to rule out a few possible (but unlikely) things and will repeat the creatinine/egfr in a few months so see if there's further change.

Would be interested to see what your nephrologist says too.

xxx

Hey again, did you discover anything new when you saw the doctor? xxx

Hi Bookworm,

My consultant apt to go over blood results and CT scan results got pushed back to this Thursday instead.

How are you getting on?

Do you know what blood tests you are having? I had 5 separate vials taken but no idea what they are testing for and no idea what any of the possible conditions you mentioned are, trying not to google!

I was pretty much in your position 6 months ago only stage 3A, pregnancy dropped my eGFR to 54, with creatinine at 124, my function has since improved but I had some very dark days when I first found out. The incredible ladies on this thread helped me so so much:
www.mumsnet.com/talk/general_health/3964834-Rubbish-Kidneys-Support-Thread?

There is a lot of information on

kidneyresearchuk.org

Your eGFR and creatinine levels sound really good. You may never progress too much. It depends on the underlying cause.

I was diagnosed aged 41 with kidney disease. I’d been feeling exhausted, dizzy, breathless and generally crappy for months but had no idea why. My urine was foamy and legs started to swell so went to GP. Ended up in hospital for a month with extensive DVTs caused by Nephrotic Syndrome. I thought I was just peri menopausal. It’s been a rough 4 years but I’m finally on a treatment that seems to be working for me. Fight to see a nephrologist.
I don’t think about life expectancy. My kidney function is currently good and I feel better than I have for years. Your nephrologist will make sure you are well looked after. I bought some urine dip sticks so I can keep an eye on the protein levels in my urine. It keeps my mind at rest!
where abouts are you? X

Hi everyone, thank you for your responses. I've only just seen them as I don't seem to get notifications from MN on my phone anymore, so I've just seen them on my laptop. So just an update, my doctors sent me for ANA and ANCA blood tests to rule out the causes of kidney disease. He said he didn't think either would come but positive, but wanted to rule it out anyway. Well, two days ago I got these results, and I don't understand what they mean!

Tests:
Antinuclear Antibody (HEP2)
Anti-neutrophil cytoplasmic antibody screen

Result: Borderline

What you need to do: Speak to doctor

Antinuclear Antibody (HEP2)
Negative
(<1:80)
Do not use the ANA Hep2 test alone to rule out autoimmune connective tissue disease.

Anti-neutrophil cytoplasmic antibody screen
Potetntially abnormal
Negative
(<1:20)
(A negative ANCA makes the diagnosis of active granulomatosis with polyangiitis (formerly known and Wegeners) or active microscopic polyangiitis unlikely, unless there is strong histological, radiological or clinical evidence to support diagnosis.

Message from surgery said to call GP within two weeks (this usually means they consider it urgent), but I can't get to talk to her until Monday, and my nephrologist is away at the moment it seems! So I can't talk to anyone. I just don't understand and I'm so worried - what is it I have?? I thought it was CKD, now something else? Something worse?! I don't know anything about this. Does anyone here? Can anyone provide any reassurance?

Thank you so much if you can help. Best, Stephanie

xxxx