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’m actually not sure now you mention it. My PD nurses know it’s going to be kept outside so think it must be ok. They suggested one of these if i didn’t want a shed

www.diy.com/departments/keter-store-it-out-midi-wood-effect-garden-storage-box/7290112634276_BQ.prd

Has anyone had any success with PIP? My consultant said to apply last year but the form was endless and I don’t think I would have enough points for anything at all. I might look again now that dialysis is imminent.

Do you have a welfare officer at your renal unit? Mine has one who can advise on all those kind of things, might be worth asking?

The is a renal social worker but he has said he doesn’t offer assistance because he would help me appeal should I be declined. So I’m on my own. We have something called Money Matters in Scotland (not sure if it’s a national wide thing) and they might be able to offer guidance. I’ll maybe give them a call in a week or two.

Hope your op goes ok tomorrow @HairyPotter, I will be thinking of you and sending strength. You totally got this 💪🏼

Hi All.
Anyone struggling with giving sympathy to friends who're struggling with their covid lives. I know I'm being crap and I know many of my friends and colleagues have had a really shitty year not seeing family and juggling stuff at home. And I know that many people have poor mental health right now. Mostly I'm fine to let them rant away. But every now and then I just want to scream at them - do they not realise how lucky they've been and how trivial some of their moaning seems to me? Logically I know that everyone needs a moan about the small stuff and there is not much else to chat about apart from covid. But sometimes I feel like they just have no clue what I've been through. And then of course I feel like a total bitch ☹️.

Well remembered @SandysMam.
Will be thinking of you too @HairyPotter.

Thanks @SandysMam and @ShinyHatStand. Not going to get much sleep I don’t think. Have taken one dose of industrial laxative with another at 3am (not envy)
I need to be at hospital at 7.30am which feels unnecessarily early.

Shiny I know what you mean, You’re far from a bitch. I don’t think people have a clue how difficult this all is, especially as we look well.

Hope all goes well @HairyPotter

Hope it goes well @HairyPotter

All the best @HairyPotter - what a dreadful night. Hope the recovery is quick

Morning! Hopefully you are all done by now Hairy, lots of rest and hopefully you can give it a good couple of weeks to settle before you need to start using it.

@ShinyHatStand I don’t think you are a bitch at all!! Because you had your transplant in the middle of lockdown etc, they probably don’t have a clue what you’ve been through because they wouldn’t have really seen you anyway.
They just see you in your skinny jeans cycling up a hill thinking lucky old Shiny!
I also think there is that misconception that a transplant fixes you. There’s still a million drugs to take and tests to do and the fear of rejection probably still lingers just as much as the fear of failure pre-transplant. Take a deep breath, smile sweetly when they moan…and come slag them off on here
It is a blessing we don’t have to sweat the small stuff anymore and have that divine gift of inner peace that only the half dead can achieve!!

@ShinyHatStand I get it about struggling with sympathy for other peoples seemingly trivial problems. It's hard when people dont get it, especially the mental side of it.

I am not sure I have achieved inner peace yet @SandysMam but I am trying ! Trying to prepare myself as much as possible helps. Thanks for the tip off about the outdoor storage by the way @HairyPotter. I am worrying I'll need a spare room / bigger house for all this! I think most people in my situation go for PD so it is nice to see a couple of people on this thread opting for it. Hoping once I have decided options and there is a plan in place I can work on being more zen-like

😂😂😂😂 at "divine gift of inner peace that only the half dead can achieve"

That's made my day

Ommmmmm

I suppose because you don’t tend to go into the ins and outs of how difficult an experience it is unless people are v close friends. People just assume it is like Holby City or a soap where someone feels a bit ill, gets diagnosed, is transplanted immediately in circumstances that would never happen in real life e.g their milkman crashes and they get his kidney, is better within days and goes on to lead a life where it is never mentioned again. It’s so unlike real life but people see these fictional portrayals and assume that everything is fine.

I often feel irrationally angry at threads on here where people are fretting about absolute rubbish e.g I’m pregnant and I ate an apple with a bruised skin- have I harmed my baby? Or the health/weight ones where people spout absolute drivel about the body/immune system as though they are experts. They really should appreciate that they have wonderful healthy bodies and need to stop fretting over shit or following dubious diets.

I might have that printed on my coffee mug at work

@OrganTransplant123 totally know what you mean about TV!! Both Tracy Barlow and Carla on Coronation Street have had transplants, it’s never been mentioned since! Completely ridiculous!
I am exactly the same about the health anxiety threads, they are all healthy with nothing to be anxious about and wasting so much time worrying about nothing! I want to shake them and say just enjoy life!!

I hear you all. I'm also dealing with a DH who had a stem cell transplant (so we are the House of the Nearly Dead) but the difference in support for our chronic conditions is marked.

Acknowledgment is all. Well, a bit of understanding wouldn't go amiss! ( Not from DH.
He's great, he gets it)

Today is function test day. I will be mostly drinking water.

And HairyPotter I'm thinking of you and hoping your recovery is speedy and bump-free.

Good luck Fuzzy, don’t get obsessed with the numbers remember, hopefully you are all ok

Thank you Sandysmam. Isn't it good when someone understands?

Hope all goes well @FuzzyPuffling It’s worth bearing in mind that it’s really individual too. I started dialysis at 13 but some people get down to 7!

My bloods were done by my usual HCP, who is an absolute star. She told me I looked "amaaaaaazing!" ( the weight loss), asked after my husband and our vaccine status, cares if we are mentally healthy too... and took my blood out in the sunny car park. I loves her. I want her to be in charge of the whole NHS.

Hi everyone. I forgot about this thread but just caught up on all your posts last night. How could I forget you - you're such a nice supportive group it's exactly where I should be!

Agree with the annoyances over people not getting it / worrying over non existent shit. I'm lucky enough to have a handful of very good friends but actually we rarely get beyond
"how's DH?"

"Fine-ish, good days & bad days"
Which is all true but doesn't really cover the excess of stress and worry in our lives!

The children are back at school now. We're both vaccinated (I got in as a carer in group 6). My second dose is next week, DH has had his already.

My 6yo has been talking about her worries at school and it always comes back to dialysis. She says she hates it. I've talked to her about how it keeps daddy alive but she's more upset about him not being able to do stuff with us (swimming mainly). I think this is the first time she's realised the implications of it as for so long we couldn't do anything anyway because of lockdown, so now things are opening up it's becoming more obvious to her. Bless her. It's a hard lesson to learn at 6 years old.

Hope you all have a good Monday

Hi @renallychallenged, dialysis is looming for me too. I am undecided on which kind. Thanks for your earlier posts about PD, they give me hope I can survive this! Is your husband still getting on ok with it? In my head I am trying to prepare for dialysis as a worst case scenario and be positive about the things I can still do on it (unless I am lucky enough to get a transplant-for-life like Tracy Barlow of Corrie!).

Sorry to hear your daughter has been worrying. I have young kids too and the last thing I want is them worrying over this. Is there any support to help children deal with this? Mine are quite young so maybe it will become their normal. I had no idea about swimming on dialysis. I have other issues with swimming pools and I cant easily take mine to lessons - but I always thought one day! Seems COVID has taken all the time we had left.