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!!

That’s amazing you are out walking already! It’s your turn to be called our favourite word on this thread, wait for it…you are an inspiration
Seriously though, bloody good effort, especially in the snow.
Have you got to “shield” now for 3 months? I was told I would have to shield for 12 weeks after the transplant if Covid was still around while the immuno suppressants were at the highest dose but I feel really torn about taking the kids out of school to do that. Feels so unfair on them but I can’t really go off anywhere to recover alone so seems like the only option. Guidance might have changed now though.

Ha! Thanks @SandysMam I don’t feel inspirational!

No one mentioned the shielding for 3 months until the day I left hospital. My DH as well as the DCs are at school so there isn’t any point in removing the DCs when DH still has to go to work. I was told to avoid mixing with anyone outside my household so I’ll stick to that.

@SandysMam and @OrganTransplant123 you are both inspirations to me! So good to hear you felt ok once on dialysis. I have wasted so much energy worrying over this. I am absolutely dreading feeling dreadful though - by this point had you both gone on sick leave?

Agree its really good to know they are still doing transplants. I did not know about the shielding - that will be hard with kids at school! Hopefully your DH might have extra antibodies having recently had it OrganTransplant123? Hopefully it wont come back to your house! We dont have room to isolate so if one of us gets covid we will all go down. Quite worried about transplant situation with little kids bringing home all these childhood germs!

Glad you are out and about OrganTransplant123, be careful on the ice!

The thing about kidney disease is it creeps up on you, so I didn’t really realise how awful I felt until I started to feel better! So I just kept on going! There wasn’t any sudden “I am so ill” moment, just a general loss of condition (like an old horse!). The worst bit for me was between having the PD catheter fitted and starting the dialysis, I was pretty ropey then and slept a lot. Now I can actually watch a whole film in the afternoon without nodding off!

Your description of kidney disease as making us like an old horse made me laugh so much @SandysMam

@queenofwobbles I only went on sick leave when I went down hill so rapidly that I needed a neckline fitted. I was planning on PD. Most people have a more steady decline and have time to prepare better.

While I remember, don’t forget for your hospital bags: plenty of nighties, knickers a size or two bigger, some loose trousers (I forgot and had to leave hospital in PJ bottoms!). Long phone charger was invaluable. Also eye mask, lip balm and warm socks.

Awful offal

Please let that be the next thread title!

I'm still having blood pressure issues, it's not going down as much as they'd like, have had an increase in BP medication, but still not budging. It's a two weekly wait again. On the plus side, I've lost almost a stone as have been put on metformin for PCOS and have very little appetite.

What are the anti rejection tablets called @OrganTransplant123?

That’s a pain about the BP @AdditionalCharacter hopefully they’ll find the right combination to bring it down.

It’s tacrolimus levels they monitor plus I’m on MMF and prednisone. I’m hoping they reduce the prednisone soon as my face is rounding into a moon.

Thanks for the bag packing tips @OrganTransplant123 very useful, I had my bag packed when I was first activated but as times gone on I have pinched bits out of it and now there’s nothing left hoping being unprepared might mean I get a kidney soon!!! Hope you are recovering ok, embrace the moon face, I bet you look lovely.

Hope your blood pressure is ok @AdditionalCharacter, mine is always up and down, the consultant just shouts at me to get it under 120/80 as if I could if I only wanted it enough! The tablets don’t seem to help much! It’s mostly around 145/90 but can get really high if I’m stressed!

Hope everyone’s having a start to the week.

Pack your bag @SandysMam as you never know when the call will come. Mine was packed but sorting out last minute stuff e.g how will Dd get to school, cancelling meetings, telling work etc my head was all over the place! I think if I’d have packed then I’d have missed most of the essentials!

@SandysMam. I found ear plugs a great help, as there were lots of machines bleeping throughout the night. So pleased you are finding dialysis more straightforward than you imagined. Hoping to hear good news re transplant very soon

@Sherwil16 nice to see you back on the thread! Hope your kidney is still doing ok!
Still not packed my bag!! I will put it on my list for this week!!

@SandysMam eye mask, lip balm and flip flops for the grotty showers as well.
Got my next blood test on Tuesday, had to go to A&E for unrelated reasons last week though and my creatinine was 133 so I do not have high hopes for a blip or miraculous recovery, nervous as hell to be honest.

Evening all.
Long time no see as you all dropped off my list and my phone disagrees with MN - as in it has stopped working, so I am dependent on my laptop.

We've been having a new kitchen fitted (and walls knocked down) in the past month, so my head has definitely been elsewhere.

Right...excuses over. Organ NEW OFFAL!! Amazing, and hope you are going on really well.

And hello to pineapple, and a big wave to everyone else!

@PineappleSun please try not to worry too much, 133 is still pretty low…mine is 600 even on dialysis and I’m feeling good (my urea is much lower, that’s the main one that makes you feel rough), happy and running around after my kids. You’re not dead until you’re dead so try not to waste precious time worrying, it can get so much worse and you might still be fine!! You will just cope.

Hi @FuzzyPuffling, enjoy your new kitchen, how lovely!

@SandysMam thank you for the kick up the arse, you are right, I will deal with it as it comes!

Wise words from @SandysMam @PineappleSun obviously in an ideal world you don’t want a kidney issue but please don’t worry yourself into a state before you know what you are dealing with. Write down your questions ahead of your appointment so you don’t forget once you are in there. I’ve got a blood test tomorrow too so will hold your hand virtually.

Thanks @FuzzyPuffling exciting about the new kitchen. Is it finished?

@Sandysmam and @OrganTransplant123 I feel like a poor old horse some days! I try not to think about my kidneys (which already disgust me) as offal but I will try to keep plodding on! I hope you have a speedy recovery OrganTransplant123, I am sure the 'moonface' is not as bad as you think - it does go away right?

I am really glad to hear you are back running around after the kids Sandysmam. They will 100% ring when you are least prepared, I get your logic . I am already dreading the jugs of tepid hospital tap water (maybe that is just me!). I am terrified of wearing ear plugs in hospital since anyone could burst in at any time, but am so pleased to hear its the norm that others use them! I pray it will not be as grim as the maternity wards (flip flops essential!).

Hope you are doing OK @PineappleSun. Did they have an idea what caused it yet? You got some tough love there from Sandysmam but its so true.

Hello to everyone else and good luck to anyone waiting for bloods!

@queenofwobbles nope, I haven't had a nephrology appointment since the big decline so no idea, I think the lack of communication from them is probably making it worse, I've only had the numbers on my chart and Google to go on.

@PineappleSun fingers crossed for the test tomorrow. Hopefully it will give you a better idea what you are dealing with. You will be ok either way

@queenofwobbles my local nephrology ward is lovely. Most rooms are private suites nurses/doctors/other staff are very attentive, all needs catered for. There is a lovely little old lady who comes around with cream cakes and other high calorific snacks once a day to fatten us all up. Hopefully yours will be the same. Not at all like a maternity ward where you have very little sleep and lots of crying babies.

Thanks @AdditionalCharacter this sounds amazing! I would definitely turn up to all in patient appointments if I knew there was cream cakes and a private suite!

@OrganTransplant123 congratulations 🥳 that's wonderful news. Amazing it happened so quickly.

@SandysMam it's great to hear you sounding so much more positive. I know you were so worried about starting dialysis and so im glad it wasn't as bad as you feared.

News from here is I've been approved as a live donor. We will hopefully go into the next shared donor matching run (I'm not a direct match so have to do it that way).

I've also had covid but DH didn't get it which is a relief. He isolated away from us so it was hard looking after the kids & house while ill but worth it not to pass it on.

Durrr I forgot I usually use this name for this thread sorry! AuntyC x

Ah that’s fabulous you have been approved as a live donor! Hope you are feeling ok about it all, it’s a lot of pressure. Any idea when it’s happening?

We have to go into the shared donor scheme. So 4 times a year there is a big computer programme that matches non-compatibile pairs to other non-compatible pairs.

I'm not getting too stressed about it as the chances of finding a match are slim. If we get match I'll get stressed then 😂