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!!

Thanks guys, I find just hearing about you doing it, either PD or HD incredibly calming. Real people who have gone before me! It just makes me feel more able to cope if that makes sense. No pressure, you don’t have to pretend you enjoy it, but just you getting on with it really helps me to feel determined to get on with it too.

I love that you had a night away @OrganTransplant123, bloody well deserved!

The main things I want to be able to do when on it are just look after my kids and keep on top of the house so that DH isn’t doing it all and burning out in the process. I also want to try to still look ok! So have the energy to do my hair and put some make up on.
I know it sounds so shallow but it is important for my self esteem. I work for the NHS (admin) so if my work is crap I feel like they would be hard pushed to sack me on dialysis so not too bothered about excelling at work although have to keep my job so a basic standard will be required! Some days I am so busy and knackered I think how the hell will I have the time to fit dialysis in but maybe that’s when standards have to drop.

@queenofwobbles will your work be accommodating do you think? One good thing about this bastard pandemic is at least WFH is more acceptable. If I feel able to WFH whilst dialysing that would help enormously as those hours would not be wasted.

@SandysMam "busy and knackered" sums up my life, I dread it getting worse! Life is hard enough with work and kids and keeping a house ship shape (my house is not ship shape!) - we need to cut ourselves some slack.

I hope with the Disability Act and reasonable adjustments it will be ok but I don't know what adjustments I might need and I don't know anyone who I can ask (apart from you guys) and I am not good with unknowns! I am still hoping to channel Maddy Warren on twitter who is dialysing while leading a crazily full life.

I am with you 100% on the make up - I am on a quest for industrial strength concealer for my exhausted eyes!

Hi everyone, how are you all?
How are you getting on with the dialysis @HairyPotter?
I heard a great podcast, diary of a kidney warrior with the queen of dialysis talking. She was so positive and talking about how diabetics are told to positively manage their condition at home whereas loads of kidney patients are met with barriers for doing dialysis at home and now she wants to change that. It was an interesting listen, she is fabulous.
I am feeling mostly ok, don’t think it will be long now until I need to start which I am obviously dreading but trying to familiarise myself with the process with you tube vids etc so I know how to do it all confidentially.
Can I ask what an average dialysis time table looks like for you guys who are on it?

Confidently not confidentiality although I don’t really want people to know either

Hello! Sorry to hear that things have progressed. Try not to worry too much, i was exactly like you but have found it’s definitely not as bad as I feared.

I’m not in a particularly good routine as yet, I’m moving on to four bags as of tomorrow and I’ll be honest and say I’m not quite sure how I’ll manage. I’m going for a rare night out and leaving at 4pm. Think I’ll need to be up early and try and do 3 before I leave, then a final one when I’m back.

It takes around 30 mins for a drain and fill. A drain on its own is around 10. Showering a changing exit site dressing is probably another 15-20 mins. It’s not painful in the slightest, the surgery was pretty sore when I sneezed or coughed for a few days but only needed painkillers for one day.

I’m due back at work this week so will need to try and work round that, luckily I’m only doing a few hours a day to start with so should manage ok.

Any questions, please just ask. I don’t know anyone else who is doing this so I know how lonely it feels at times

Thanks Hairy, I want you to be able to be real on this thread, particularly if you need a moan but in all honesty, your post is what I need to hear. It all sounds…manageable! Can you do night time in the machine if you are worried about fitting it all in? I wanted to avoid that but the more I read about it, the more I think it might be the way forward.
I am excited for you going back to work, I hope they have been good to you.
Good luck with it all, keep us posted on how if all goes (but please do rant if you need to, not your job to keep me going!!)x
Also, how much do you notice the fluid in your cavity (horrific word ha ha) as you move around in the day? Have you had to change your wardrobe completely?

Also, do you have to shower and change the dressing after every drain and fill? So 4x a day?

I think the machine would be better but annoyingly, I need to go for a wee at least twice a night. Even more annoyingly, we have converted our loft to make a bedroom and there isn’t a loo up there. So I can’t change to the machine unless I put a commode up there. That’s a step too far at the moment. I’ve been to a urologist and am hoping they can sort that out then I can get trained on the machine.

Until then I need to be on the manual bags which does take up a chunk of my day but I’m doing literally nothing else (until I restart work tomorrow) so it’s not been an issue.

No, you only need to shower and change the dressing once a day. There is an awful lot of hand washing involved though. I have a step by step guide to the PD process if you’d like to look at it. Let me know. It sounds daunting but it does get easier.

I can’t feel the fluid but sometimes my stomach (well the top of my stomach under my boobs) feels quite solid when I’ve got some in. It’s not always but can feel a bit uncomfortable.

Anything else, just ask. I can send you photos of my set up if you’d like. Take care

Thanks Hairy, if it’s easy for you to pm me your schedule that would be great but don’t stress yourself, I imagine it’s different for every one.

Do you in a way feel a sense of relief now it is actually here? I feel like we have had a similar journey of slow decline and the wait is agony really, heading for the unknown. If I find some peace that comes from it actually being time then that might be a silver lining I guess.

Just popping in to say hello to everyone, and I have read all your posts.
I have nothing decent to add, but I wish you all well and all those kidneys, hang on in there!

Hi everyone! whenever I post I seem to kill this thread so I hope it doesn't die!

@HairyPotter I am also desperate to know its ok on the other side! Your days sound so busy with all the manual changes and now throwing work into the mix - good luck juggling it all please let us know how it goes.

Can you stop the machine easily at night? What if there was an emergency? I have little kids who are still needing me in the night so being attached to a machine is a worry. But doing it all manually sounds like a massive faff. If you worked from home could you use the machine in the day while sat at a computer? I have so many questions! I am glad to hear you say it is not that bad!

@SandysMam I too have a feeling of impending doom that it wont be long. My function seems to erratically drop so next time it drops could be the big one. It's absolute torture knowing it will progress, but not knowing when. Life would be a lot easier if I hadn't have known and suddenly it hit. After all normal healthy people can have kidney failure with the bonus of not having spent all their waking time worrying about when its going to happen and what it will be like.

@FuzzyPuffling its nice to know people care - I am praying all these kidneys hang on in there too.

Hope you are all doing well anyway

QueenofWobbles I'm not letting you kill the thread!
I hear and can absolutely appreciate your concerns. They all seem entirely reasonable to me, even though I have no answers. And yes yes yes to the stupid, erratic nature of kidney numbers.

@queenofwobbles aka thread killer extroidanairre
It’s so rubbish isn’t it. Want to say something inspiring but sometimes you just need to acknowledge how rubbish it is! I have a month now until next bloods so I have decided to give myself a fortnight off. Other than a nagging feeling of being hungover, I feel ok so am going to pretend it’s not happening for a bit and give myself a break.

Are you activated on the transplant list yet?
Try not to worry too much about fitting everything in when you start dialysis, I imagine it will be like having a newborn, eventually you will get into a routine and feel like venturing out then maybe even getting back to work etc. It won’t all happen then boom you have to cope. And hey…once we start dialysis, we won’t have to worry about when will be start it anymore!! That in itself will surely bring some relief!
Sending you calm vibes and peace. Deep breath, you can do this.

Thanks for the well wishes @FuzzyPuffling.

I'm still here, just plodding along with nothing much to update on.

Getting an MRI in 6 months rather than a year to see if the operation and increase in chemo tablets works.

Hope you're all doing well. I don't really understand the dialysis so can't add any worthwhile information.

Hi @AdditionalCharacter how are you feeling? Can you still feel the tumours? I think I remember you said you could, if not, I have dreamt that up!!

Still in awful pain when I lie down. I'd give my right kidney for a good night sleep
Yes I can still feel them, it's a like bit like when you're pregnant and lying on your side.
Thinking about buying an adjustable bed, but they're IRO £2000 as still want to share a bed with DH and I'd have to get one where both sides are adjustable.

Not activated yet but they are aware of me and wanted to get the ball rolling with tests etc. I have an appointment coming up so am back on the water . I am not feeling too bad otherwise. I am shattered but keep telling myself lots of busy mums are naturally zombiefied! I am trying to stay optimistic and cling to the positive stories on here like life rafts! Want to shift some weight and get healthy since that is about all I can do - I have been watching queen of dialysis' work out videos on you tube and thinking how amazing she is and that I'd need a personal trainer and private gym to be motivated enough to do that. You are right we will cope because we have to!

@queenofwobbles I’ve sent you a pm.

@SandysMam have you been activated on the list by the way? Did I miss that?

I have been! They activated me when I hit eGFR 15. I guess one good thing about knowing about it all is getting ahead of the game!
Hope you’re all having a nice weekend

Hi all,

Sorry to hear things haven’t improved @AdditionalCharacter it sounds so frustrating.

Try not to worry too much @queenofwobbles you just get on with it when it happens. It’s hard to explain really as obviously I wish I didn’t need it but once you accept this is the way it is then it’s easier to make peace with it.

I’m still waiting to be activated on the list and I’ve been having dialysis for over 6 months now. I’m so impatient! I’m waiting to speak to the transplant coordinator so I’m not sure why there is such a delay as the surgeon was happy. I just checked my egfr and it’s dropped to 10 which isn’t good!

Hi @OrganTransplant123 nice to hear from you! I really think you have been TOO patient! The benefit of knowing about kidney decline is to get stuff in place so you don’t spend as long on dialysis and get on the list early. If everything is good to go, and you have gained the weight, you should definitely be on it by now. I bet you are frustrated!

Thanks @SandysMam I’ve been in the normal weight range for a while now. I’m going to chase it up with the renal nurses.

How is everyone feeling about no masks and social distancing? I’m really frustrated at the lack of consideration for the immunosuppressed. Why could they not have opened things up but kept masks? Presumably it is going to be inevitable that my dcs will catch it at some point. There’s people on threads saying that those who are vulnerable can just shield if they want. Righto, I’ll lock myself away from my children, give up my job. Grrrrr.

Hey @SandysMam I didn't put 2 and 2 together sorry- amazing you got activated so quickly. I am hovering just above the dreaded 15 so they are "starting the process" but not really sure what it all involves - head in the sand! And who knows, I could be at 15 now - appointment due!. Its amazing we could be carrying on as normal(ish) yet are eligible for transplant at 15! I cant get my head around that.