Crappy kidneys thread 2

[SandysMam]

Welcome to thread 2 for all those lucky enough to have kidney problems 😆

Kind, supportive thread for kidney related chat and the physical and mental toll living with kidney disease and general chronic ill health takes. Link to previous thread www.mumsnet.com/talk/general_health/3964834-Rubbish-Kidneys-Support-Thread?page=40&reply=117738679
which documents my personal journey from late stages CKD to peritoneal dialysis. Hoping for a transplant before this new thread is full!

Big hello to all existing members and welcome to anyone new!

As you'll see from my previous post, I'm back. Hopefully some of you will remember me. I have TSC, and this has caused several tumours on my kidneys, luckily not cancerous, but the only treatment is to treat them as if they were. The biggest three are 14cm, 10cm and 8cm.

My magnificent consultant got it wrong about my tumours shrinking significantly last year. The years MRI showed growth in both sides, using 2022 sizes not last years. It's been quite an emotional rollercoaster. So now I'm heading towards major surgery, just waiting for the appointment from urology. It'll either be partial nephrectomy on both kidneys, or radical nephrectomy on one, possible partial on the other. I suspect the one on my right, the 14cm one, isn't likely to be partial as it envelopes my whole kidney. Has anyone had a partial nephrectomy before?

And just for fun, I'm veering in and out of stage 3 CKD, stupid eGFR, so removing one will definitely put me there. Have had a couple of kidney and water infections this year, but bloods taken when out of infection.

My husband will going on Dialysis at some point. He has had a fibula implanted in his arm so that he is ready. He is hoping to eventually have dialysis at home. I would prefer not, because of the responsibility. How would both of our lives be affected? I’d be grateful for your experiences and opinions

Hi all,
Has anyone had a genetic test done? How long did it take from having the test to getting the results? (For FSGS if relevant)

Thanks!

Hey crappy kidney folk. Wondering if anyone can share their experiences… I have a longstanding history of UTIs and kidney infections. Since August I have had kidney pain that’s more or less constantly there. Sometimes worse when I need the loo but generally I can just always FEEL it.

I finally saw referred dr today who ordered a kidney function test and ultrasound. Obviously need to wait for the results but I’m already worrying that I’ll be dismissed if results come back clear. Obviously I do want good results but I’d be keen to know if anyone else has experienced ongoing kidney pain? I’m worried I suppose because I expressed concern over kidney health last year and saw dr privately and they did various tests and procedures. Though no kidney function test, an ultrasound was performed which looked good and now I find myself back over a year later with pain that’s has lasted months & I fear they will put it down to muscoskeletal & leave it at that.

Hi ladies kidney function on a recent blood test showed as gfr 30, had another blood test and it had gone up to 36. Type 1 diabetic.
Also having injections for low b12.
Nothing has been diagnosed yet, but thought I'd join here and see what other people's experiences have been x

Hi all,

Sorry to the new people who posted- I hadn’t seen the thread had updated.

@Smudgeis13 I did hemodyalisis at home but had a neckline not a fistula. I did it all by myself usually during the day when there was no one in the house at all. I was trained thoroughly on home dialysis and for the first few sessions my nurse was there. You also have a helpline for the machine you can ring at anytime.

Hi @Barryplopper how fast your kidney function can decline is really individual and people can have stable but impaired kidney function. It sounds as though you need a referral to a nephrologist to see what is going on.

@SandysMam hope you are doing ok. Haven’t heard from you in a while.

Hello, I would like to join the thread. DH has just been dx with iGa Nephropathy with an eGfr of 31. He’s just spent a week in hospital where the did a biopsy. I am just trying to support him and info gather at the moment.

He has an appointment with a Nephrologist on the 9th Dec.

He's already got congestive heart failure/cardiomyopathy 😞 which was dx last year and some of the medication used to treat igan he is already on but his eGfr has dropped from in the 70’s a year ago. I now wonder if the igan was the underlying cause of his heart problems.

Oooh, i never realised this friend was on here

Hello fellow Kidney warriors

Hello I'm new to the thread as I went for a health check the other day and was surprised by my kidney results.

They seem to show I have ckd3a!

Creatinine 92
Egfr 54

I don't drink alcohol and lead quite a healthy lifestyle so I was surprised.

I'm 61.

The only thing I did notice was my cholesterol which is 6.5 and has been since 2012. Unfortunately no one thought to inform me of that!

I've had all weekend to worry myself silly over this. I'm shocked and don't really know how to proceed. I have a GP appointment on Wednesday but just wondering if I'm worrying unnecessarily at this stage. (I am a worrier anyway)

Any advice please 🙏

Hello @twiddlingthumbs69

Didn't want to leave you hanging! Welcome to the thread.

We always say on here that none of us are medical professionals, and can't offer advice in that way, but just our own experiences.

Sorry that you received unexpected kidney results. It is upsetting, and shocking - our kidneys tend to be quite quiet when something's up.

Your GP should arrange repeat bloods to check your egfr result again - and in the event of a similar result, you should be referred to a renal consultant team for further investigations.

I'm not going to tell you not to worry, because it is upsetting. But the best thing to do now is just to find out what's going on, and move forward from there.

And come back to this thread if you need support. We've largely all been where you are, and we're here to tell the tale.

Wishing you the best. x

Me again!

So I had another blood test and it's confirmed I have ckd3a. Completely baffled tbh. I haven't got diabetes, high BP etc.

Seeing the Dr next month who will discuss with me but I'm assuming at this stage it's just diet changes? Again, I eat pretty healthily. Don't drink alcohol, don't have any highly processed food.

In a way I wish it was something I'm eating etc that has caused it, at least I could do something different then.

I haven't got any symptoms and I'm just wondering, is this going to progress?
Or, is it just a normal part of aging and most ppl are walking around with it without knowing until they have bloods done?

I'm just a bit fed up I think, especially as I can't speak to the Dr for another month 😢

Hiya @twiddlingthumbs69

In answer to your thoughts, yes, they will probably be weirdly casual about seeing you at Stage 3A. You'll most likely have appointments quite spaced out, perhaps even months apart, to keep an overall eye on you.

Have they suggested a biopsy/scans/further bloods to confirm any particular diagnosis? CKD is something that is generally caused by something else, so they will probably want to discover the root cause. Mine is an autoimmune disease that causes scarring, so kidneys looked fine on ultrasound, but a biopsy confirmed it.

In terms of lifestyle, just do what you're doing, and live normally. Avoid high salt foods and stop taking any NSAIDS pain relief - Ibruprofen being the most common offender. Paracetamol and co-codamol are fine for reference.

In terms of progression, no one can predict it - and it really does depend on what's caused you to get to Stage 3A. Some people stay stable for years and years, some have slow progression, some get there suddenly. Lots of things can affect it.

My best advice is to live normally, and put it out of your mind as best you can. Symptoms for CKD for me didn't appear until my function got into the region of 25-30%, and even then it was all manageable until around 15%, when I felt pretty pants.

In fact, most people don't know they have CKD until they're sat in A&E with horrible symptoms and an egfr of 8% - so in some ways, you are 'lucky' to be in the system and under medical care. If things do take a turn, you'll have time and the team to figure things out.

I know how scary it all is, I've been there too. But it can, will and might be ok.

Hope to have helped.

: )

@twiddlingthumbs69

Hay

Just to say

Don't take any nsaids (ibuprofen)

No salt and watch your potassium, like banana’s

@MissKittyFantastico84 thank you so much for your advice.

They haven't suggested any further tests, only another blood test later in the year.

I am going to try very hard to put it out of my mind, there's nothing I can do about it apart from keeping an eye on food etc.

Apparently I've had high cholesterol for 12 years (no one thought to mention it). Just started on statins so I'm wondering if high cholesterol had anything to do with it.

Who knows?

As you say, at least they've picked up on it now so I'm lucky in that respect.

Really annoying as Ive always been good with my diet, don't drink, don't smoke. Perhaps I'll start!! 😂

Hi everyone
I’m so happy to have found this thread. My 8 year old daughter has just had a scan which has revealed some scarring on her kidney(s), possibly from a UTI. We have an appointment with a paediatrician in a just over a week to discuss the results but I’m absolutely devastated and so worried for her future.

We took her to the GP back in late August as she was waking up wet in the mornings after being dry since she was 3 and the diagnosed a UTI. She had no other symptoms such as urgency or pain. After a course of antibiotics it cleared up but a few weeks later she was still
waking wet, took her back to the GP and they diagnosed another UTI so more antibiotics.
Since then she has woken up wet most mornings. After repeated visits to the GP they finally agreed to refer her to the hospital.
Blood tests showed slightly raised creatinine and urea levels as well as a complete lack of thyroid hormone, so she in now on daily Levothyroxine. The paediatrician referred her for the kidney scan and now this is the point we find ourselves at.

We don’t know how bad the scarring is yet, or how it’s affecting her kidney function but I’m
just looking for any similar stories or support because I’m beating myself up that I’ve missed a UTI that has now caused damage to her kidneys.

Hi all my just 18 year old grandson has been diagnosed with MN kidney disease just before Xmas 2024 which we where told us very rare 1 in 100,000 adults between the ages of 49 and 70 year olds.he got swollen legs and eyes about four weeks ago and was told he has no options but to start immunotherapy once he finished he's exams.he started yesterday and he's face neck and legs have swollen.he has to have blood thinners ,water tablets long term.can anyone tell me if they know or have MN and can educate me on what it's all about I'm so worried.thankyou.

Hi please can I join this thread. CKD 3b, type 2 diabetes. I see a nephrologist every few months who keeps an eye on me.

Doesn't CKD suck!!!

Hi. I have been really inspired by the individuals in this thread and hoped you might like to be part of current research into support for individuals with kidney illness.
Would you like to help current and future individuals with Kidney Disease?
We would love you to support our research into patients’ views of Kidney Disease and how it impacts your life, by completing a very short questionnaire.
It should only take about 5 to 10 minutes to complete and your answers will remain anonymous.
Your views are really important. Please click on the link below to find out more and complete the short questionnaire:
Link to questionnaire
Many thanks for helping!
Melissa (Researcher at The University of Reading)
This research is being conducted by the School of Psychology at the University of Reading (in collaboration with the Royal Berkshire Hospital Kidney Unit) and has received ethical approval by their Ethics committee.

Can I join? I received a gp letter on 23rd December saying I've been diagnosed with CKD stage 3, and advised to start taking a statin to lower my cholesterol. It's been a shock as I've always enjoyed good health. I'm 68, active. But I do love salt, not in cooking but on my food, and I am overweight, very stressed and anxious, in therapy at the moment) and sleep very badly. My blood pressure is ok and I'm not diabetic. I've got to have a urine test so don't know if I've got protein in my pee. I've got loads of questions about dietary does and donts and what next steps should be- will I be referred to a renal specialist? Any advice gratefully received.

Do not add salt to anything at all
Dont take Nsaids / Iburofen
Dont drink fizzy especially Dark coloured ones
Be careful with pottasium- Banana's are not good for kidneys

Hello @Joystir59I hope you managed to have a nice Christmas, despite the shock!

At Stage 3, you don’t have to be hugely cautious with your diet but you can make some changes now that may end up more important if your kidneys decline further. As PP mentioned, absolutely zero NSAIDS from this point on - that can include anti inflammatory drugs like sudafed, so always check.

There’s no point in guessing what might be the cause - it could be a wondrous host of tricky things. I would imagine you’ll be referred to a renal team, but do chase up with your doctor, as the first referral may take some time to come through at Stage 3. Mine was five months, and I was pregnant!

Very easy to say, but please try not to panic. Kidney disease is generally a long term event, and you’ll be well looked after by people you may get to know well. And this thread is always here for support!

With all the best x