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!!

*January 2020 not 2019!

Thanks HoneyBee I really appreciate your story. I think I feel a sadness that I will never not be without worry about my health, but focusing on today is so important as I guess that’s all that any of us are guaranteed!!
I am going to work really hard this week on trying to control the panic about the unknown. Today I am ok is my mantra! I frequently have these blips and then with a bit of work can get a grip on myself. The stories from you all really helps me feel less alone for sure!! Thank you.

Sorry you're having a low moment @SandysMam. All this lockdown and covid crap really doesn't help.

For me it was a question of wrapping my head around the fact that I had a chronic condition. This took me a long time, and for a long time I felt like it wasn't fair and "why me?" But I was diagnosed over 20 years ago so have had a long time to get used to it, I'm not saying it was easy going on to dialysis but my attitude was - well what alternative have I got? And once you get into the swing of it, it's not too bad. You just need to adjust to the fact and accept that this is part of your life now. After that it very quickly becomes routine. You do have days when it's a pain and you can't be bothered with it but in general it actually was a positive thing because I felt so much better and could achieve more when I wasn't actually dialysing. Also because I did spend quite a lot of time hooked up to a machine I decided to make the time count so I started to learn French on dualingo and caught up on all the films and tv programmes that I wanted to watch!

Hi Additional, hope you’re doing ok!
You’re totally right about the Covid crap not helping what would otherwise be a tough time anyway. I am feeling the lack of real life support, a big hug from friends would really help right now! I feel better than I did last week, that was a really low moment.

Some excellent advice there HoneyBee, you sound like a really positive person which actually have better physical outcomes in chronic illness. I am going to hold onto the fact that dialysis will eventually make me feel better. I have been re-reading some of the earlier posts on this thread. There are loads of bits that helped me at the time and I need to remind myself of!

@SandysMam sending you a virtual hug

Thank you

Showering with the line is tricky @SandysMam I’ve been having shallow baths then washing my hair afterwards leaning over the bath. It’s a bit faffy!

Can I ask a question @HoneyBeeGood ? Pre dialysis I work 2.5 days a week. I’ve not worked since starting the dialysis in Jan but I’m not sure what to do about going back. I feel ok on the two days a week I’m not dialysing but at the moment with the DCs at home for homeschooling I can’t imagine juggling everything! Did you work on non dialysis days?

@OrganTransplant123 I work from home and always have done even before the pandemic so for me I was able to work when I felt like it, and if I was too tired I just rested. Sorry, that doesn't really help you, but on non dialysis days I did usually manage to do a full day. My children are grown up and have left home so I didn't have the nightmare of home schooling (I feel so sorry for all you parents that have to do that!)

Thanks @HoneyBeeGood did you work for yourself? I’m thinking that if the schools go back soon then I’ll see about going back 2 days maybe with a staggered start. I’m on an insecure contract so I do really need to go back asap.

I found what you said about the positives of hospital dialysis interesting. They are really friendly and it is a nice atmosphere on the unit. I just really hate the travelling especially at the moment when I get home and have to immediately help the DCs with school work.

DH and I run a garden design company so we have an office at home which has been a godsend in the pandemic as we didn't really have to change anything. Also, if I wasn't feeling great DH could take up the slack for me.
I found the travelling okay once I could drive myself, when I first started dialysis they sent a taxi for me and because I live an hour away from the hospital, that was quite tough as you are not always in the mood to make small talk for an hour each way!!
That must be quite hard having to deal with the children when you get home, but hopefully if they go back to school soon it will be a bit easier for you, I think a staggered start is a really good idea (are you on the shielded list and will your work be able to cope with that?)
I'm actually missing everyone in the unit, I haven't been there for over a year because of covid, all my consultant's appointments are over zoom so I missing catching up on all the gossip

@OrganTransplant123 I keep forgetting to tag people. I'm not very used to contributing towards threads, I'm more of a lurker but this one I actually felt like I had some experience!

I can’t tell you what “hearing” you guys chattering on about this is doing for me...I am feeling so much less alone and so comforted by the fact that wherever I go next, I am not the first and my mumsnet friends have already done it and if they can get through it, so can I!! You are helping me massively.

Are your work quite understanding Organ? It’s so shit that we have to worry about these things on top of everything else.

I’m an hour away too @HoneyBeeGood and I agree about the chatting on the way home in the taxi. I’m usually trying not to be sick! Yes, I’m on shielding list and usually work from home a lot anyway. I’m just struggling to imagine the logistics but then again I struggled to imagine having dialysis three times a week before I did it so..!! That’s encouraging though that you were able to drive yourself. I can’t imagine that at the moment.

Glad it is helpful @SandysMam I honestly feel much better on the dialysis than before.

@OrganTransplant123 As far as I can remember I started driving myself after about two months. It was a lot easier and I did always feel sick in the back of a taxi but as soon as I drove myself that went straight away.
@SandysMam Happy to chat anytime!

Hello everyone! I just wanted to drop by again and day that I'm really glad I found you. I'm currently egfr 15 and conversations about transplant/dialysis have begun. I'm finding it very hard but it is so comforting to hear that people have been through it and come out the other side.

In particular, @SandysMam - I often find that I could have written your posts word for word. The same emotions, fears, highs, lows. I think that's what I'm looking for right now - I often feel very lonely in all this, despite having lovely friends and family. I just wish more than anything that I wasn't the sick one. That it wasn't me.

I keep trying to be positive and look to a hopeful future, hopefully post-transplant / but I think right now my biggest fear is that I will always be this scared and this consumed by worry. I want to enjoy my life, despite the shit kidneys! If anyone post-transplant can tell me it does get better, that would really help me.

In the meantime, i'm glad you're all here and we can go through this together. I did join an IGAN facebook group but I had to avoid it as it became a storm of people talking about what was wrong with them and asking for medical advice. It wasn't the positive space I'd hoped for.

I hope you are all safe and well. Kidney warriors unite (although I'm not sure I feel like a warrior most days...)

xxx

@MissKittyFantastico84 I promise you it gets better. The actual bit before dialysis/transplant is honestly the worst bit. It's the fear of the unknown- once you get into it it becomes part of every day life. I'm not saying it's all sunshine and flowers, there will be good and bad days but in general you will feel better for dialysis and having a transplant is the best thing ever!! I'm just over a year post transplant, I take pills in the morning and at night and am now just seeing the consultant once every two months, the rest of the time I don't think about it.
So hang in there, it will get better.

@HoneyBeeGood Thank you so much for replying - that's what I'm holding onto right now, life beyond this horrid unknown phase. I keep reminding myself that it's OK for me not to be loving life right now - all in, it's pretty shite! I'm very lucky to have had a few people come forward for transplant so fingers crossed I get a match. And I'm also trying to get my head around dialysis, as I know that could happen too if pre-emptive doesn't line up in time. But I just needed to know it gets better - so thank you. x

Hi @MissKittyFantastico84 sounds like we are in exactly the same boat...whilst I am sorry you are going through it it does help to know I am not alone!
I have felt better since I posted my really pitiful post last week, thanks to Organ and HoneyBee...I also feel better now the weather has warmed up a bit. The bitter cold really did me, I felt about 100 years old.
There is also the chance that we may stay where we are for a bit and the worrying is a waste of time...or we might get hit by a bus and it really was a waste of time

I am looking forward to the summer...even if I am on dialysis I will feel the sun on my face and that is something to look forward to!

Have you been offered any kind of kidney peer support? We spoke about it at my unit but haven’t done it yet. I think I worry that the wrong person could actually do more harm than good!! I know we need to hear the truth but positive stuff is really what I need to get through it, I am expecting the rough bits, but not the bits where I will feel ok if that makes sense and hearing about it is a welcome surprise. HoneyBee...you would be fab at that job!!

I think this year has been crap too as everyone feels so SORRY for me!! Because I am vulnerable and they make that face and say things like “oh I would be fine if I caught Covid but you mustn’t catch it as you are so vulnerable” with a patronising wince!! I have always been a strong person and I find it really hard people feeling sorry for me or being seen an weak or limited. I am probably just being horrible though, kidney disease has done that to me a bit which I try really hard not to let it. Less of a kidney warrior and more of a kidney arsehole

Sorry I am on one now...just thought of something in addition to the people feeling sorry for me for being vulnerable...I actually think I am stronger than any of them without major health problems. The constant waiting for blood results, feeling rubbish, fearing the future, all whilst getting on with life. That’s not vulnerable, that’s true inner strength!!

@SandysMam OMG I much prefer kidney arsehole to kidney warrior. It describes me PERFECTLY.

My unit do keep mentioning peer support but nothing ever comes of it - I think I'd really have to chase it down and you're right - I'd worry about being so vulnerable in front of someone I don't know. I've already come across one power trip renal nurse and that stung (everyone else has been amazing, don't get me wrong, big up the NHS).

I hear you about the 'oh poor you' sctick. I think it's just so easy to get angry in our situation when people just don't bloody get it - even if they are just trying to be kind or support you. Like I said, it feels so lonely sometimes. I find myself getting angry at the strangest things - people on instagram twatting on about pointless stuff, even people complaining about how hard this Covid sitch is - TRY DOING IT WITH FAILING KIDNEYS GUYS.

I am seeing a private therapist which I am very lucky to be able to do - that has helped me no end. But it's still so HARD. Every day is a different level of hard right now.

Sending you all my best anyway. I'd love to hear more about your journeys with this. If it's OK, I'll continue to share mine with you too xxx

I also understand about the 'faux' sympathy, I use to hate the 'and how are you?' with the head tilt, it always used to make me inwardly swear!!
I think you guys are amazing- when I went through everything I didn't have to cope with covid so to go through what you are going through with the extra worry on top is nothing short of miraculous.
I'm here anytime you want x

Hi @MissKittyFantastico84 welcome to the club no one wants to be in! I know what you all mean about the sympathy. I don’t like it when people say things like ‘I don’t know how you cope’, ‘you are so brave’, ‘I couldn’t do it’. Well they would because it is this or die! You just get on with it. I’m no braver than anyone else.

I’m very hopeful that life post transplant (if I get one) would be great. My liver transplant gave me 16 years of good health and it is still going strong- my kidneys are letting the side down! My consultant said that a kidney transplant would be a walk in the park compared to a liver transplant I think he was joking!

The head tilt!!! Oh my god that is it!! The bit that gets me
The head tilt that says i’m so glad this is happening to you because it means it’s less likely to happen to me!!
I am being horrible really, very grateful when people are kind but it doesn’t always make me feel better. I will probably laugh now next time it happens!!

@SandysMam The head tilt... oh man. A therapist once put it to me like this though - imagine you're sat on the bus. You look around and think everyone else has got it easy - they aren't dealing with this. But everyone on that bus is going to get sick one day - they just don't know how or when. In some ways, we've been forewarned - and we have the luxury of being aware of our mortality in a way perfectly healthy people aren't. We've had that shock, that realisation - and that does come with some positives.

It might not always feel like it but I do have a greater appreciation for what I have. More empathy for people going through hard times. And I give waaaaay fewer shits about things that don't matter. Don't even get me started on people who waste my time! I don't want to come off as all Snow White about it - just that while people may 'head tilt' at us, it's only because most of the time - they are still labouring under the illusion that they are immortal and that we're just unlucky.

So maybe we should head tilt right back... xxx