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 Hi! Thanks for the new thread, I hope you've had a good day

Hello, this isn't about kidney disease as such but I thought you guys might know. After having persistent blood in my urine, I've been told that I have a duplex system and extrarenal pelvis. Can anyone describe that in layman's terms? Sometimes I get a bit of a dull ache in my left kidney, too

Thanks for another thread @SandysMam

Heres hoping our kidneys behave through this one.

Sorry can't help @gandalf456 , tried Google but it was all gobbledygook

@gandalf456 Sorry I can’t either! Meant to add, we have absolutely no medical knowledge, this is more for the emotional side of kidney problems! Hopefully your doc will be able to explain more. Feel free to come back for a moan about it though if it turns out to be a problem!

Welcome to the new thread @AdditionalCharacter !

Here for the new thread!

Also hoping for a transplant before the end of this one. Anyone else had a dreadful time getting activated? There seem to be lot of delays since covid despite my unit going on about being activated pre-emptivley (all lies!). Is it just my crappy unit? Fingers crossed it should be very soon!

Hi everyone,

Thanks @SandysMam for the new thread.

It was very slow for me to be activated @queenofwobbles I’d been on dialysis for almost 8 months plus then I was suspended immediately for having mrsa and then because DH had covid! Some of the initial delay was my bmi being too low but even once that was ok it felt like an absolute age.

Thanks @OrganTransplant123 I remember you posting about this. I feel quite stressed because they go on about the 3 year wait and how important it is to get a pre-emptive/early transplant, but its all lies! I ask at every appointment and get fobbed off with 'delays'. Looks like I will be starting dialysis before being listed which is disappointing (given how much they go on about early transplants!). Also so much for them going on about some people not starting dialysis till very low eGFRs of 6 or even 4 (which was the lowest in my unit apparently) and me hoping maybe I can get away with it for a while yet - its also all lies because how much function you need depends on how active you are and your age! After speaking to the PD team I am expecting to keel over any minute now . Anyway. New thread new rant!

Random question OrganTransplant123 but if you lose too much weight do you know whether they threaten you with NHS issue food supplement shakes? 😬

The trouble is @queenofwobbles that we’re all different and although some people don’t start dialysis until a egfr of 4, I started mine at 13. In my case my urea was sky high and couldn’t stop being sick. I completely understand your frustration with the listing though. I felt I was being forgotten.

Yes I got the ‘delicious’ drinks, I tried one and then didn’t bother. I got the most wonderful diet sheet with snack ideas such as: a scone with butter, jam and cream. Tips included add butter to your vegetables. Put cream in coffee.

Ha! I am a bit worried they will bring out the shakes at some point. Did you just tell them no way?! I will be asking to borrow your sheet if it comes to that! I have got off lightly so far but we have discussed starting at some point before I get too sick. Sorry you experienced sickness too - I think being sick is what I dread the most so I hope dialysis keeps that at bay! I feel forgotten about too and it annoys me they make it so difficult to get hold of people in the NHS - you can't just quickly e mail a help desk and get an update!

How is it going your end by the way Organ, hope you are doing well?

Hello all (runs into new thread and plonks self on the Bench of Crappy Kidneys)
Cheers Sandysmam

I was sick prior to dialysis and then after dialysis sessions at first but it all settled down. The renal nurses said most people don’t vomit so you might be fine @queenofwobbles They said most people start dialysis because of the fatigue.

I accepted the drinks but told the dietitian that they were foul and I’d try the high calorie diet sheet instead. I put on weight but it was slow going.

Yes, I’d have felt better knowing what stage I was at and that my file wasn’t gathering dust in someone’s inbox.

I’m doing very well thanks. I’m seeing my consultant next week - hopefully he has done his diabetes research!

I wasn’t really ever sick either, and I never really realised how bad I felt until I started the dialysis and started to feel better. I honestly think you probably feel at your roughest now and if you can cope with that, then you are ok! I hope the same will be said for if I get a transplant and that I will feel better than I do now.

I totally get your rage @queenofwobbles i too was always told “it won’t get as far as dialysis, we’ll get you a pre-emptive transplant” but obviously never happened. Now I feel like I will only get the transplant when I am no longer doing ok on dialysis. I had a dream last night I got the call! It was so clear and I felt so happy but then woke up!
I am trying to just get on with life for now though and I have more good days then bad, but the dialysis is a tie and I am still very much chronically ill in that I need to plan everything I do, either around the dialysis or around conserving my energy (still live by the spoon theory). I actually quite enjoy dialysis time though as I get to sit and watch shit on YouTube, I try to save it for then so I have a treat!!

So glad you are doing well @OrganTransplant123.

Thank you @SandysMam , I felt better for having that rant! Feels like its just me vs NHS and I have zero powers.

What a horrid dream to wake up from. I have seen so many posts saying transplant is life transforming and you will feel so much better, that you will have all this energy to spend on deep cleaning the house after years of neglect. It's going to be a bit of a let down if we get there and feel just the same! Keep the faith - your call will come!

Glad to hear it @OrganTransplant123 and good luck with the diabetes thing - sounds like a bit of an odd development!

The thing is with dialysis is that you plough on as best you can and live your life, be a mum, friend etc. Like @SandysMam says it limits plans, it’s a tie. No one would choose it (I nodded along with your permission to watch rubbish though!).

I felt much better on dialysis than I did beforehand but post transplant I felt like I’d had my batteries changed. You will feel better.

The call will come when you least expect it (keep those bags packed) and you’ll carry on living your life as before but without the tie and with more energy.

Thanks @OrganTransplant123 Lovely post ☺️ I had a moment with my little one tonight where I just felt lucky to be alive and be with them still. Moments like that make up for all the rubbish for sure.

Hello, Sorry to jump on this thread and change the subject completely but I'm not sure who else to ask as my GP knows very little about CkD (feels that way anyway). Anyway, I am on holiday next week and I am terrified of flying. Usually I would take a few diazepam but since being diagnosed with CKD 2 I'm wary of what meds I take. Anyone know if these are especially bad for the kidneys (like, in the same way ibuprofen is)? I've Googled it and found little info.

Hoping someone can help 🙏🏻 xxx

Sorry @bookworm1982 i have no idea, if you are stage 2 then you are probably not under a renal unit but could it be worth contacting your local renal unit and asking if they can ask a consultant? Poor of your GP not to advise though!
I know I was always told that even if meds say not for CKD patients this usually meant regular use and very occasional use wouldn’t cause any harm but I cannot advise you properly either way as I have zero medical expertise!
Hope you enjoy your holiday (once you get there!).

I have CKD 3 and try not to take any drugs whatsoever. The very occasional paracetamol in dire circumstances is it. No idea about diazepam specifically, I'm afraid.
Have a good holiday!

@bookworm1982 Have you seen this? www.kidneycareuk.org/about-kidney-health/treatments/medication/

@bookworm1982 it’s not unusual for CKD patients to be chucked diazepam propanalol etc etc if you are stressed totally freaked out over dialysis decisions or so I heard! so I think you’ll be fine but obviously your GP should check and adjust the dose. Think the worry is mostly if you have very low function (probably not you) is that meds normally excreted by kidneys can accumulate. Or sometimes as you say NSAIDS can damage. I get your stress though - as SandysMam says almost all meds come with a CKD warning! Enjoy your holiday!

Hi all,

Sorry for posing once and then not again until now, I've had a rough few weeks! Another yucky kidney infection had me on the floor again (third since end of March) and then I had my pyeloplasty last Tuesday. I realise reading back that my first post was complicated! Essentially I was diagnosed with PUJ obstruction, which is basically a narrowing of the tube that connects kidney to bladder, so urine was not draining properly from my kidney and has now caused a lot of damage to my right kidney. These days it's usually something picked up in pregnancy on an ultrasound but my mum never had one of those so I think I probably had this a long time and only just now in my 30s started feeling severe effects. Interestingly what looked like a 6cmX9cm cyst on the CT scan was actually just where my kidney was totally swelled and misshapen from hanging onto all that backed up urine. I had my pyeloplasty last week (where they cut out the narrowed bit of ureter tube away and rejoin with a wider opening). It has been a bit of a long hard slog recovering this week but I feel better every day. Prognosis is good, I now (hopefully) have a kidney that drains properly but it has caused some irreparable damage so I think I'm always going to have one dodgy kidney that needs to be kept an eye on, but hopefully no more pain and recurrent infections from now on.

I have a stent in while it heals which has to come out in a month, so not quite over yet, but I have been told this isn't nearly as tough as the full pyeloplasty operation and should be home the same day.

Kidney issues are no joke I have found out very recently, and have utmost respect for those of you dealing with such complex, tricky diagnoses and treatment.

xxx

Hi @Lolacat1234 thanks for the update, so glad everything went well and the prognosis is good. Remember you can absolutely live with only one functioning kidney and even dramatically reduced function…it’s only the unlucky few (me 😆) who go on to develop end stage failure. Hopefully this might be the end of it for you and you can enjoy life without any kidney worries!

Another here (well, DH) who was told that the ideal is to have a transplant before, or just at the point of, needing dialysis. This notion seems to have gone by the wayside, though, as it’s no longer mentioned as a possibility. We have assumed that the lack or available organs and delays caused by the pandemic have made this much less likely to happen. Obviously that is no one’s fault but it is disappointing that there has been little to no communication about transplant so far this year.

As it happens despite an eGFR of 5, DH is still able to work and to exercise so he has been luckier than many of you. Apart from occasional bouts of nausea and chronic insomnia, he is living a relatively normal life at present.

He takes a load of meds prescribed by his renal consultant but never takes any OTC stuff apart from a very occasional paracetemol.

@thing47 I am not even activated yet (despite everything in place!). Just down to crappy delays within my hospital it seems, although I know the list got longer in covid. So I still have to start the dreaded 3 year wait. I realise its not that simple and people get the call at any time (and so thankful we have this amazing waiting list by the way), but I just know I will be the unlucky person who balances the stats! Lots of people asking dont you have a live donor which makes me feel shit for not being able to magic one up! As if it is that simple just to get a live donor anyway! Rant over!

DH was first activated almost 3 years ago, was called in once 2 years ago and prepped but organ wasn't suitable. Then there was a slight hitch, and he was reactivated about a year ago.

No live donor here either. DH has one sibling who was tested but no match – sibling was prepared to do a direct donation but not keen on being involved in a chain of donations, which is absolutely fair enough, so that's it. I can't help because although my kidneys seem fine at the moment I've had Type 1 diabetes for 40 years so not a good candidate!