Rubbish Kidneys Support Thread

[SandysMam]

Inspired by chatting to a couple of other posters on different threads, I thought I would start a group for anyone struggling with kidney failure, dialysis or after a transplant.

Kidney Disease is a massive problem in the U.K, but in my experience, when you say you have it, people don’t really understand what it means.

Personally, I have kidney failure, an eGFR around 20, and am expected to need dialysis or a transplant anytime from now really, although hoping I can hang on a bit longer.
Excuse me if I am a bit vague about some of the details as some are quite identifying.

Physically, I often feel absolutely fine, but on bad days am exhausted, dizzy, and my brain feels foggy. I bruise like a peach and my eye bags are horrendous, but I generally look ok which is why it is so hard for people to understand the illness. I work, exercise, act (mostly ) normal!

The mental side is worse though. Waiting for the thing to happen that I feel means the end of the world but might not be. Fearing every blood test being worse than before, dreading the day I have to have dialysis. Dreading what that might mean for me and my family.
I don’t have anyone suitable, or offering to give me a kidney, and I feel so deeply uncomfortable about friends thinking I might be after theirs when I mention my illness.
I also feel so sad that my only hope is someone else’s tragedy (from a desceased donor) and this pains me mentally and makes me feel like a terrible person. I also know a transplant isn’t a cure all and comes with it’s own issues.
I just wish my kidneys worked!!
I wake up in the morning and forget for a second, before remembering and my heart sinks.

BUT!!!
Kidney failure has made me appreciate life in a way I never would before. I do not sweat the small stuff which is a lovely release.
Knowing about it has allowed us to plan, so financially we should be just about ok, and it won’t come as a huge shock when it all kicks off.

I would love to hear from anyone going through this, or anyone who has and can speak from experience of dialysis or a transplant. Feel free to rant a bit but also hopefully some positive stuff.

I am rubbish at checking threads but will try to come back to this one, even if no one else joins, it might serve as a nice resource for others to know they are not alone.

So...if you are renally challenged, welcome!!

I don't know if I'm welcomed here - I have scarred kidneys due to recurrent infections..

I ended up in A&E last Friday (11th) with suspected urosepsis due to a kidney infection. Long story cut very short, not septic.. just a raging kidney infection, again. I'm a week into a 2wk course of coamoxiclav/augmentin.

Am I unreasonable to ask for bloods redoing to make sure its fully cleared? The infection came on over 12hrs & it has unsettled me quite a bit

Of course you're welcome bubblemonkey...rubbish kidneys is rubbish kidneys! And my kidneys are probably scarred too ( according to the neph. But no one knows quite why)

Sounds like you're having a really tough time of it. Are the antibiotics working? How are you feeling? I'd definitely go back if it doesn't clear.

@FuzzyPuffling

Of course you're welcome bubblemonkey...rubbish kidneys is rubbish kidneys! And my kidneys are probably scarred too ( according to the neph. But no one knows quite why)

Sounds like you're having a really tough time of it. Are the antibiotics working? How are you feeling? I'd definitely go back if it doesn't clear.

I don't have a bladder so any urine infections go straight to my kidneys which is fun. I'm still queasy but the antibiotics are strong so I'm hoping its that. My left kidney was quite sore last night but seems to have got over itself today. Tired doesn't even come close, I'm falling asleep by mid afternoon.

In which case you need to rest. Bodies heal up better while we sleep. Don't fight it.

( What happened to your bladder? Don't have to say if you don't want to!)

@FuzzyPuffling

In which case you need to rest. Bodies heal up better while we sleep. Don't fight it.

( What happened to your bladder? Don't have to say if you don't want to!)

I'm an open book it decided to give up on life when I was 18. Stopped being able to pee overnight. I think in time, it got used to being lazy to the point of not contracting at all on its own. Combine that with the fact it felt like it was full of acid it burnt that badly. Imagine cystitis, ramp that up by about 100x. I was glad to see the end of it.

Crumbs, I should say so. That sounds horrible.

Hi Bubblemonkey. It’s grim isn’t it? I have damaged kidneys due to infections and I’m currently awaiting surgery to have 2 partial heminephrectomies. They’ve put me on permanent antibiotics to reduce infection in the meantime. It might be worth asking if you are having recurrent infections.

Hi @Bubblemonkey are you feeling any better today? It sounds as though a retest to check the infection has gone would be a good idea. Especially with things closing for Christmas.

I’m always tired too. I can’t watch a film without nodding off in the middle!

Welcome @Bubblemonkey

@OrganTransplant123 apologies, I must have you mixed up with someone else on this thread.

Put a urine test in on Friday, still have a kidney infection and back on a different antibiotic. Fed up now. All I want to do is sleep.

Don’t worry @AdditionalCharacter It’s hard to keep track! That sounds grim. Hope you are able to rest up. I had a morning nap and felt much better for the afternoon.

Merry Christmas and happy new year fellow kidney folk.

Anyone else having to shield again? I'm fuuuuuuuuming. I really want to go to work, it's COVID safe and I feel like I'm massively letting them down by not being there. Big boss said hell no.

Hi @AdditionalCharacter yup, shielding again here. I was working from home anyway so it’s not made a huge difference to me. I wouldn’t worry about letting them down, the boss decides and she/he clearly wants you to stay safe.

My egfr has dipped to 13. I’m really alarmed. It was 17 in November. 15 mid Dec and now 13. It seems to be hurtling towards dialysis, I’ve not been assessed by the surgeon for a PD tube yet. The transplant centre haven’t been in touch- although Christmas delays stuff. The hospital where I’ll have the PD tube fitted has declared an emergency because of the number of Covid patients. It’s all a bit shit especially as I feel awful. No energy, vomiting. Urgh. Sorry everyone, I really needed a cathartic moan.

I hope everyone else has better behaved kidneys and managed to enjoy Christmas.

Hi everyone, Happy New Year! Sorry this dropped off my threads and I lost track! Great to see people are still using it for support.

Well I think today might possibly be the most depressing day...Monday...January...Lockdown aghhhhhh!!

@OrganTransplant123 sorry your numbers are going in the wrong direction, it’s so scary but bear in mind that dialysis will hopefully actually make you feel better! If you are at the point of vomiting then you sound like it will do you good although it is certainly a tough step to take. I know I will feel the same when my time comes in the not so distant future.

@AdditionalCharacter I guess just get through January and hopefully you can get back to work, it is so isolating WFH though!

In other news..I had Covid! It wasn’t nice but also not terrible and I recovered in a week. Feels so weird to have had it after being terrified all year! Feel very lucky to be ok.

Sorry that post was a bit crap, I typed a big one and it disappeared!!

I work in care, so can't work from home. Unless they send me a service user for January to care for That might actually be fun.

Sorry you're having a crappy time @OrganTransplant123. Hopefully your team can set you in the right direction

Ha ha don’t suggest it or they will probably do that!! Will they furlough you?

Oh wow @SandysMam so glad you recovered ok. That must have been a scary time.

Thanks @AdditionalCharacter the team are all so lovely. I’ve got a clinic appointment next week so hopefully things will seem clearer then.

I get full pay, so not bad at all. I'd still rather be at work.

Missed the end of your post! Glad you're ok, I was the same with COVID. Spent half the year fearing I'd die if I got it, then it didn't really affect me. Strange isn't it!

I’ve been told I need to have a central line fitted next week to start dialysis. The hospital is riddled with coronavirus so I’m not really looking forward to having to travel there several times a week. I was planning PD at home so it’s hard to mentally adjust somehow.

Oh @OrganTransplant123 how scary for you! Take a pack of antibac wipes with you and use them where you have to touch anything, bin straight away (so maybe take a small plastic sack), mask, short sleeved top, hair tied back if it's long, and assume that all the medical professionals are following appropriate PPE guidelines.

Or hire a zorb and bump everyone out your way.

Thanks @AdditionalCharacter I love the idea of the zorb! Shame Christmas has gone. I could have put one on my list! Hope you are ok.

Doing ok here. Had to reduce my meds for a week as causing hideous ulcers on my gums. They've more or less gone, so increasing them again tonight.

So fed up with shielding though. Feel like it's a massive set back work wise. But that's a completely different moan.

You coping with shielding?

Hi everyone, how did the central line go @OrganTransplant123? Hope you are feeling ok. I am so exhausted at the moment, trying to work and home school with kidney failure is no fun. Trying to keep my chin up but this is truly a bleak month!

Get your dialysis started and then you won’t have to worry about starting it, you will be doing it!
Thinking of everyone at the moment, I know we don’t know each other but sending lots of renally challenged love at what is a pretty shitty time all round! Keep focusing on small pleasures and daily gratitudes if you can, we can get through this for those who love us and need us!

Thanks @SandysMam I’d describe the fitting as brutal! I’ve had two dialysis sessions since and I feel so much better.

I was starting to feel really desperate and low, I didn’t have any strength left in me. It’s starting to lift now although I’m still really sore where the line is. The stitches are really itchy and I can’t work out how you are meant to shower but not get it wet. If anyone with central line experience knows?

Hope your ulcers have gone @AdditionalCharacter

Ah I thought you would get a bit more of a rest to let the line settle but they went straight in with the dialysis! That’s good you feel better not worse, I have so many questions for you but will save those for a bit further in the future! I feel like I will be relieved to start now, life feels like such a slog, zero energy, freezing cold, could just sleep ALL the time.

Additional, I might have missed this but do you know what is causing the anaemia? Do you inject Epo regularly? I had terrible ulcers before starting on the Epo, where I was so anaemic. Forgive me if have talking rubbish though and missed something crucial as to why you get them!!