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 totally second allowing yourself to feel what you're feeling. We don't always have to be brave and strong and there is no shame in having a massive cry and letting it all out. It's part of being human and it helps us move past things. I had a HUGE sob in our spare room a few weeks ago - I'd been trying to hold it together after getting some bad news, to appear like I was dealing with it. It didn't feel good at the time, obviously, as I was crying - but after I can sense that it did me good.

Our strength comes from allowing ourselves those moments and then picking ourselves back up again and not staying there. We should all be proud of that!

And yes, I think men in general like to 'fix' things - whereas I think women understand that they need to be healed. My husband does the same - starts offering solutions when all I want to do is whinge! It must be hard for a partner to see us go through this though - so I get it. xxx

I really want donuts now
In normal times I'd be in the local co-op buying donuts right now.

When I was diagnosed one of my greatest fears was missing some of my kids childhood while I was still pretty well just because I was falling apart about what the future might bring. I've become better over the years at enjoying to good times while they are here and the riding out the shit when it comes.
I remember sitting in A&E on my own (COVID times) about 3 weeks post transplant absolutely shitting myself, in hysterical tears. And then just thinking - you can do this, you've done this before, you know you'll cope with whatever your shitty kidneys chuck at you. And I keep coming back to that feeling.

Shiny I have had those A&E moments too. We have small kids so anytime I have gone in with a stomach bug or infection or something I have been on my own in hospital. I think we become very good at that. I have sobbed though sometimes in these situations, silently of course, and then try to pull it together and be brave for the kids. The show must go on! I want them to remember a happy mum, not one who was always scared or upset. Kidney stuff makes us patient too, we are good at waiting!

Can I do a boastful gloat?

I just cycled 40 miles! 😮

Well done @ShinyHatStand , that's fantastic! 👏🚴‍♀️🥇👏

Thanks @HoneyBeeGood

That’s fantastic!!! You should be super proud of that, hope your legs aren’t aching today!

Legs aren't too bad.
I've taken to doing one of the Yoga With Adriene videos called "tired legs" before bed after a long cycle and that seems to help.

Today's exercise will consist of digging over a very small patch of the garden that is badly neglected. Want to get it done before all the weeds spring back into life. Need to take it easy though - my core muscles are still wrecked. It's one of the reasons I like cycling rather than walking/running.

Hello all,
Just joining to ask a question please.
My DF has CKD and his eGFR was 11 at the last test.
He is nearly 94 and and has a cocktail of other medical issues including heart problems and diabetes. He is very frail, but has a very positive outlook on life even though his world has shrunk due to the virus and he is now pretty much housebound.
He remains cheerful and wants to carry on going for as long as he can, even though his quality of life is so poor. He is going to ask for dialysis at his next consultation. I just wondered if he is likely to get offered this? He is very keen, but I know the dialysis itself can be quite brutal and personally think he's too far gone for it to be an option.
Any advise very welcome...

Hi @SausageCrush
I don't know anything about ckd in older adults. But I do know that even in younger adults the decision about when/if to start dialysis is really tricky as there is no simple relationship between egfr and symptoms. His docs will have to make a tricky judgement as to how much dialysis would improve his current quality of life. Mine got down below his current levels (pre transplant) and I was never on dialysis because my symptoms didn't warrant it. You'll need to have a tricky conversation with his consultant - I suspect the guidance is very different in older adult who have other medical issues, but they should be happy to have an open discussion about his options,

Wow @ShinyHatStand that’s amazing! Well done!

I’ll be brutally honest @SausageCrush that I don’t think it will be an option or else the drs would have discussed it with him before now. I’ve just started dialysis and it is really physically hard.

First of all you have to have a procedure to fit a line or create a fistula. This is no easy undertaking and comes with an ongoing risk of infection. Then there is the dialysis which obviously helps kidney function but then leaves the body requiring iron infusions and vitamin supplements. It’s three times a week and you have to travel to your nearest centre that has a space. You are given a slot either 7.30-12.30 1.30-6.30 or evening 7.30-12.30. It’s a long day especially if you have to travel any distance to the unit.

I’m the youngest on my shift on the unit with most people I’d say were in their 60s.

Thank you for taking the time to reply.

I think he's too frail and old for this to be a realistic option, but I won't say anything as he is quite optimistic about this being the way forward.

I wish you both strength and perseverance

Thanks @SausageCrush I hope I wasn’t too overly negative. Dialysis is a huge undertaking, I certainly had no idea what was involved prior to needing dialysis, and at 41 I’m finding it exhausting! I hope your dad continues to be well.

Today is my monthly rollercoaster of waiting for blood test results to come through on MyChart.
All good though. Creatinine is still looking splendid.
I bloody love my new kidney 💜

Can I join?
I was diagnosed with CKD 2 years ago after shit went wrong during surgery.
I’m currently stuck in the admission revolving door as I keep getting infections and other health conditions have flared inflammation, and allergies complicate everything.

Once medically fit I will have extensive reconstructive surgery. Beyond that who knows? Took a gamble and had the stent removed, things were looking really good but it’s back. Along with the issues these cause of more pain and weeing.

Before that surgery pain and tiredness were part of my routine. Now I miss those days.

Mentally the whole thing has knocked me for 6 which annoys me as I was recovering really well after a break down a year or so before the op.

Ah Shiny your post really made me smile!! Today is a great day in that case! Enjoy it!!
Definitely gives me hope for the future too!

Hi @canigooutyet welcome! Sounds like you have been through it. There is every chance that your kidneys will carry on working until all of you stops! Despite this group, end stage is actually pretty rare and most kidney disease just potters along. Sounds like you have other issues though which must be tough, especially having to have numerous surgeries. Come and rant here when you need to

Amazing news @ShinyHatStand! Glad to hear it

I'm off for my first official appointment with the AKCC tomorrow - I'm dreading it to be honest, as I'm imagining that it will be a whole load of dialysis real talk. Taking my husband for support but hoping to find the strength to get through it and take in the info I need to. I've now had nine people come forward to be considered as a transplant match and my brothers are getting tested this week, so please cross your kidneys for me.

xxx

@SandysMam thanks.
Each month I feel the build up of stress in the days before my bloods, but it's definitely getting easier each month. Yesterday I had a bit of a go at DH because he always says 'it'll be fine' when I say I'm nervous about my bloods. I don't need him to tell me it'll be fine - he knows less than me about kidney function and certainly can't possibly know that it'll be fine. I just need him to acknowledge that waiting for results is stressful and to let me have a moan now and then.

Welcome @canigooutyet
Nice to have you on board.

Sounds like you've really been on a rollercoaster. Feel free to rant here anytime.
Are you able to get outside at all? I'm finding that even time sitting outside in my thermals is helping my mood.

@MissKittyFantastico84 - 9 volunteers! Wow! People must really like you 😀
I only had one potential donor and was super lucky that he was a top notch match.
The live donor thing adds another emotional dimension that I hadn't expected. Happy to chat more if you end up down that route.

Ah everything is crossed for you Miss Kitty, rubbish kidneys included! I sob every time I meet with the dialysis team, they must hate me! I hope to have PD because I honestly cannot see how I will be able to fit unit visits around the kids and DH’s work etc. I know we shouldn’t worry about work at a time like this but the truth is we have to keep a roof over our kids and food in our kids bellies and we just have zero childcare: I feel so very stressed when I think about it! But sure like everything it will work out one way or another.

Shiny, I agree with you about DH, mine is the same, thinks he has to offer a solution when I rant, but all I want sometimes is him to hold me and say we will get through it! It must be hard for them though!

@ShinyHatStand I know - I'm incredibly fortunate that no one has clocked what a knob I am.

Five are family and four are friends - a few are already ticked off the direct match list due to blood type. I'm hoping one of my brothers is a match, in an ideal world. I haven't quite crossed the mental bridge of how it will feel to accept a live donation, as right now, I just don't want to get my hopes up that there will be one. One step at a time...

Thank you for your offer of a chat. I may take you up on that in the future. xx

@SandysMam OMG I think I've sobbed every time I've been in the unit! I'm sure tomorrow will be NO exception. At least we have face masks to cover up the big red cry face on the train home! Small mercies.

I just find facing the reality of it really distressing. It never gets easier to have a sympathetic medical professional tell you everything that's wrong with you. Every time I think I secretly hope that they will be like 'LOL we got it all wrong and accidentally swapped your file with ANOTHER Miss Kitty's. Turns out you're fine!'. Such is the weird progression with kidney disease - I feel fine, I look fine, but I'm not fine.

Sorry for the ramble chaps. Can you tell I'm nervous? xxx

@ShinyHatStand thank you.
At the moment yes as long as I stay close to home or wear the dreaded pull up. The past year has been very problematic because of all the rules and not just being able to pop into pubs etc to use the facilities.