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!

@SandysMam @MissKittyFantastico84 @OrganTransplant123

I'm in such a muddle as to whether one of my medications is contributing to or even causing the poorer kidney function. So just posting here in case it rings any bells.

For the past year, I've taken spironolactone for polycystic ovaries, in my case for androgenetic alopecia. I have since learned spironolactone is hard on the kidneys but when I specifically asked my GP if I should stop it, during the appointment in which he diagnosed CKD, he kind of shrugged

And the following is from my endocrinologist, (who prescribed the spironolactone) when I had emailed earlier in the year to say my kidney readings were off:
"There’s not enough concern to stop spironolactone in my opinion but nothing is without risk."

I mean, I'd really like not to be bald, but not at the expense of my kidneys!
I feel a bit stuck as to what to do/who to ask, next.

(Spironolactone is a potassium-sparing diuretic. It's also an anti-androgen, hence its use for hair loss caused by androgens.)

Sorry @largeprintagathachristie I really have no idea. You need to demand to be referred to a nephrologist and discuss with an expert. Not knocking GP’s but they don’t always know hence why we have specialists. Good luck!

I second @SandysMam. Have you been referred to a hospital renal team? I would have thought at Stage 3, you will have been?

They will be the experts - but don't panic and stop taking it. Both those Doctors have advised it to be ok, and it's true - no medication is without risk.

When I was first diagnosed, I was put on the blodd pressure med Ramipril, which can also be hard on your kidneys!!! I was very confused!

But yes, push for a referral or make sure you have one in the works. I had to wait four months for my first initial consultant appointment....

All the best x

I've just got my eGFR results back from a recent blood test and my function has dropped from 62 to 53 in about six months 😓. I'm going to ask for a referral to a nephrologist - do you think I should get one, please?

I do not have as much experience as others on this thread but just to reassure you, I've just been discharged from nephrology with an eGFR of 55. Mine has been all over the show from 73 down to 44 so it can go up as well as down.

Hi @Meadowdog - do you have an underlying cause that would impact your eGFR?

My clinic say that any discrepancies with a range of +/- 10% doesn't raise any flags, if that helps, and you're just inside that.

I agree with Kitty. It could be a one off - being dehydrated for example can impact the test. Is your GP repeating the test? That’s the usual first step before any referral.

How are you Kitty?

Hi all, there’s a lot to read through on this thread so apologies if my questions have already been answered!

I had a routine bloodtest which has shown a low egfr & I also have a quite bit of albumin in urine. I’m just a bit confused as to whether these results alone mean I have kidney disease? I have been referred to a specialist but the appointment has just come through for 4 months away, seems a long time for something that appears very serious from what I’ve read.

Hi @OrganTransplant123 - I'm doing really well thank you! I hope you are too...

Hi @Meagain24

My first blood test for kidney disease showed an egfr of 59% and I was then booked for my first hospital consultation four months later.

Unless there's an acute (active, urgent, current) reason for your egfr to be lower than normal, they will take their sweet time to see you, especially if you're not in the later stages of kidney disease (egfr below 25%).

Most forms of chronic (long term, slow moving) kidney disease are slow burners - some stay stable for a lifetime.

So there may be no clinical reason to 'rush' - but they will also need to investigate to diagnosis the underlying cause.

This has been my experience, but happy to be corrected if others on this thread have found different.

Please also return here if you need any other advice - we're not doing doctors, but we've mostly all been through it!

All the best x

@MTistheDB 40 EGFR, I’m actually not sure about the albumin exactly but I know it’s in the hundreds (can’t get into my nhs account to check). I haven’t been given a crp.

i’ve read about AKI and I wondered how they know, but assuming an appt 4 months away means it’s not.

@MissKittyFantastico84 thanks so much for replying and appreciate your help.
i just can’t really understand if there are many other possible reasons for low kidney function and albumin or if it is always kidney disease. It seems from googling the majority of kidney problems are kidney disease, although there seems to be a few types which is also confusing

@Meagain24 It's a whole WORLD of renal fun!

You're right that there are many different causes for reduced egfr - not all of them chronic kidney disease. Diabetes, lupus (not saying you have these!!!) and yes, AKI from things like sepsis or even bad covid. Even historical events from baby/childhood!

I know it sounds impossible but google really isn't your friend right now. I did the same thing when I first found out I had an issue, but no amount of googling would have helped me to figure out what was up. I just became overwhelmed with all the information and scared myself almost silly.

All I can tell you is that it will be ok. Renal doctors really care about their patients, and generally, once you're in the ol' NHS system, you'll be taken good care of.

In the mean time, hydrate, try to stay away from loads of salt, don't take Ibuprofen!

Thank you again, you’ve definitely given me some positivity. You are definitely right with Google, I think it’s planting seeds in my mind for things I don’t even have yet, and may never have.

Do you mind me asking if you were given a specific diagnosis or is your just general chronic kidney disease? & what EGFR are you at now?

@MTistheDB oh I see, I don’t have any recent results to compare it to either. Hope you are doing well.
GP repeated bloodtest a week later & has now just left it as ‘wait for specialist’

@MissKittyFantastico84 sorry i forgot to tag you in the post above!

Hi @Meagain24

Yes, please do stay away from Google. Even with the most extensive searching, it simply won't give you the answers you need - and it will give you a lot of information you simply do not need!

I was diagnosed with iga nephrology after a biopsy in Feb 2018. It's an autoimmune disease that slowly scars the kidneys with abnormal shaped iga antibodies. I had no idea I had it until I became pregnant and my booking in initial tests showed a lower than normal egfr.

I then had a slow progression over the next five years - from 59% function to 12%. Mercifully, I managed to stay stable until after the worst covid spikes, and my HERO of a brother donated his spare to me in Feb 22.

My kidney function is now stable at around 79-84%!!!!! And I am happy, healthy and living a normal bloody life.

Not everyone ends up at this point, and it's very early days for you. But I wanted to share my full story to just reassure you that things can get worse - but they can also get almost 100% better too.

X

Just to reiterate what @MissKittyFantastico84 said above, DH (long, long before he became DH and before I even knew him) was diagnosed with kidney disease in 1991. Was told then he would need a transplant at some point.

Through excellent renal care, and a consultant who was absolutely 'on it' and constantly monitoring and tinkering with his meds, dialysis and transplant didn't happen until 2021 by which time his eGFR was 4. So progression really can be quite slow.

Interestingly, he has T1 diabetes too but has been told that wasn't the original cause of the kidney diseases and that a serious childhood viral illness (which he did have) was a much more likely trigger.

Thanks all - really appreciate it!

@thing47 it sounds like quite a journey but 30 years of slow progression sounds great in comparison to most stories I’ve read! Do you know what egfr DH started on?

Hope everyone is currently well

Hi, anyone have a nephrostomy?

Hi all, looking like I have FSGS. Anyone else in here have this? Would love to know about your journey so far so please pm me!

You've hopefully had some info since then, but hopefully I can help.

I have angiomyolipomas (AML) on both my kidneys. They were discovered like yours, incidental discovery during gall bladder scan. The operation they do is called embolisation and the AML has to be <4cm before they do it. It's more of a procedure than an operation, it's done in radiography as involves using an X-ray machine. A small cut is made on your groin, catheter inserted and dye pushed through to see the blood flow of the AML using the X-ray machine. Then if it's possible, the vein is plugged with whatever the surgeon uses and hopefully stops the blood flow to the AML and it either shrinks or dies. I've had embolisation done 3 or 4 times, can't quite remember, sadly didn't work, but that may be because my AML are quite large.

Feel free to message me if you want.