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!!

Hi everyone,

It is hard for children to understand and deal with having an ill parent. It’s a shame about swimming @renallychallenged Some units say no to any swimming but there are waterproof dressings available so so some people must do it. My DCs are older, 10 and 12 so that has different challenges. They are more aware that this isn’t normal! It’s really hard, the impact on the children does worry me.

I’d decided on PD @queenofwobbles but then got ill v quickly, had a neckline fitted and it made sense to stay on HD. The downside of HD is that it takes a lot of time. It’s like having a part time job!

@queenofwobbles yes DH is still on PD, automated overnight. It's fine. It keeps him ticking over. My daughter likes to "help" him set up the machine before she goes to bed but the actual dialysis is done while they're asleep and so I think it is a good choice for us. Our biggest problem is the tiredness - he still works full time and is exhausted by the time the weekend comes which isn't good for family life. He is dropping down to 3 days in summer so we're just hanging out for that really and hoping it helps.

Have you thought about where to keep the PD equipment? You need to store 2 weeks worth of fluid bags plus accessories. Each box weighs 10kg and you (the patient) aren't supposed to lift them because once the catheter/fluid is in there is increased risk of hernia. Do you have someone who can move them for you? I do ours obviously, Baxter deliver to the front door and then I carry them all up to our room in the attic - it's a proper workout!!!!! I can send you photos if you're interested.

I'm sure there are ways to be able to swim if you really want to. He has waterproof dressings for the shower. It's just the level of faff required v 30 mins in a pool that seems more than necessary when I can just take the kids on my own. If we went to Center parcs or something he would probably work out a way to do it.

Hi @renallychallenged nice to hear from you!! You are forgiven for forgetting us
Definitely get your DH down to working 3 days a week if you can afford it, even if he rests on those days then has a day at the weekend to feel ok it will be good for you all. I love hearing about it from your perspective as I often wonder about how my DH feels or will feel when I am on dialysis. Is he likely to get a transplant soon or just waiting for the call like so many of us?

Hope everyone else is having a good week! I feel ok this week so making the most of it, have been for a nice walk today, the bluebells are fantastic, love this time of year!

Hope everyone who was having bloods last week got the results they were hoping for.

Hi All
I agree that a reduction in work hours makes a massive difference. I did this for the last 12ish months before my transplant. Work were super lovely and counted this as a temporary adjustment and kept me on full salary. Which was very very generous.
I found that 4 slightly shorter days a week as better for me than 3 full days. And working from home to avoid the commute as much as I could was a game changer as it avoided those horribly long days where you're be home but stuck on a train.

Also it may sound daft but I found that it helped to do stuff out of the house on my extra time off. I signed up for a weekly adult education type crafty class. I found that extra time lounging at home didn't make me feel any better but using the time for something low stress and distracting was lovely. And I made some new friends. For me it was mental fatigue that I struggled with more than physical tiredness. But that may reflect the nature of my desk job.

I'm now starting to get a little stressed about the thought of going back into work tbh. I've not been in the office for over a year and have a long commute.
I'm hoping to shift to a pattern of 1/2 days in the office and 4/5 days at home but no idea if enough meetings will stay with remote access allowed for that to be sustainable.

@SandysMam yes he is on the list waiting for a kidney. Unfortunately no live donors in the picture at the moment (don't get me started on that, I have a lot of anger towards his family in particular his brother). He is quite a rare blood type (B) so it's not likely to be a short wait unfortunately.

I am contemplating being a live donor myself. I am not directly compatible but could go into the paired scheme. But it's not a straightforward decision with 2 young children to consider. All very difficult.

I'm sure dropping down to 3 days will help. He has a very senior position and so it has taken time to get the infrastructure in place to allow it to happen but we're on the final countdown now. Luckily we don't have any money worries so that's a big thing in our favour.

@OrganTransplant123 Sorry to hear you crashed like that. Do you have the option of switching to PD in the future? I am feeling a bit freaked out by the idea of a permanent catheter and fluid inside me, so have been leaning towards HD (although this sounds demanding both home set up time or travelling to a unit!).

@renallychallenged the whole home storage situation is worrying. Some photos of the set up would be amazing! I didn't realise about the heavy lifting situation. I am lucky to have a DH but it feels overwhelming to rely on someone so much (and so unfair if you live alone!). Power to you for lugging it all up the stairs!

Glad your DH is able to drop down to 3 days. I work too and am dreading the tiredness (tired enough as it is!). Not sure if my work would let me go part time (I'd have to tell them first and am still not over that hurdle!). My job keeps me sane and I don't think we could afford me not to work in the long term. I don't think it's easy to claim benefits or PIP if you are on dialysis but otherwise ok . I wondered about looking for a work from home job so I could whip out the lap top while hooked up to a machine - its probably not that simple!

@ShinyHatStand your workplace sound amazing its nice they made those adjustments. Love the idea of a new crafty hobby!

@queenofwobbles I think hobbies are SO important.
When we're feeling tired and shitty it's so easy to fall into the mindset that we have to use all our available energy for work and family. And to feel super guilty for doing other stuff in case it makes us too tired to do the basic stuff. But it's so important to have some fun now and then 😀

Might need to find that calming crafty hobby sooner than expected! I just got given my first appointment at the low clearance clinic after being referred there. They advised taking someone along but it's really hard when you both work and are juggling a family with no help - especially after covid and using so much annual leave on childcare. I've done all my appointments solo so far - felt a bit patronised by them on the phone when booking it tbh that I'd need someone with me! Absolutely bricking it. Don't know what my latest egfr is - asked them not to tell me and I daren't check online!

@queenofwobbles eugh it's never going to be good news from those sorts of appointments, I guess they think that if you have someone there to ask questions / take notes it will help you process all the information later. If you can't have anyone with you then you could maybe record the appointment with the voice notes thing on your phone so you can listen back if needed.

Do you have any idea what your eGFR is? I couldn't not look, but everyone is different.

I flicked back through your others posts and see you haven't told work yet. What do you do? It might be good to give them a heads up and there could be some adjustments they could make for you. If you were to do HD then you'd need time off to attend sessions. I know you could do evening sessions but that would impact family a lot more - i would take the time away from work if possible.

You can also ask for a referral to the renal psychology team who will help you talk through your worries and give strategies to deal with telling work / family etc. It's totally natural to want to minimise the problems and not feel like a burden etc, but on the other hand you are going to need support and you have people who love you and actually want to help you. finding the right balance is important.

I could switch to PD @queenofwobbles but because of covid there were delays seeing the pd surgeons and as I wanted to get home asap I opted to stay on HD. I started back at work last week and have done admin tasks and emails while on the machine. If you have any questions about home HD vs unit HD I’ll try to answer them.

Don’t panic about the referral! It’s nice that you can bring someone. I’m sure it is optional if you’d rather not. DH hasn’t been allowed to anything but I’d rather go to things on my own! Remember that most people they drop their eGFR really slowly and being referred doesn’t mean that it will happen quickly.

That is generous of your employer @ShinyHatStand it’s very true about hobbies/interests. I’m feeling at the moment as if everything revolves around the machine/work/children. I do need to carve out some time. I could do with a crafty hobby I can do on the machine!

@renallychallenged I’ve no family to be donors but I really don’t want DH to be a live donor. I just can’t bear the thought of him ending up being ill as well, not with the DCs.

Thanks @renallychallenged. You are right it is never good news and it just keeps beating you down every time. Taking notes or recording it sounds like a good plan. I didn't even think of COVID - some hospitals must have no visitors allowed anyway. I know my egfr is below 20 which triggers this referral. I am assuming it is quite a bit lower because of how it has plummeted lately! I am sure my work will be nice about it (and hopefully not sack me if I need part time!). I think its just suddenly everyone knowing this massive thing about you. Same goes for school mums! I wish CKD was more high profile - it would be a lot easier if it was one of the more well known diseases.

Thank you @OrganTransplant123 it sounds like you are doing amazingly well. Glad to hear your dialysis it is not set in stone - completely understand with COVID you wanted to be outta that hospital - can't believe we have COVID to deal with on top of all this! Do you work full time? If you find a crafty hobby for the machine let me know! (no idea how I will fit work, kids, dialysis and the hobby).

Definitely having a massive wobble right now! Thanks everyone for being so nice.

@ShinyHatStand your post really resonates about saving energy for family and work and no time for fun!! I’m going to show that to my DH. People without chronic illness have no idea about pacing and how important it is!

@queenofwobbles I’m sorry you’re off to low clearance but you can do this. We are lucky to have treatment options, things that will keep us alive and with our children. Tell work, it will make things so much easier, the weight will be lifted. As shit as it is, you have to accept this is happening in order to come to terms with it. And I am the BIGGEST wobbler EVER!

Have a good afternoon everyone!

@OrganTransplant123 I love you are working whilst dialysing, you are hardcore!!

Thank you @SandysMam this is exactly what I need to hear!

They definitely can't sack you!!

I do get it - I've felt bad when I've had to take time off for DH and it's not even me that's sick. But ultimately we all have shit to deal with and the people who you speak to will have had their own shit somewhere to cope with that you don't know about. They may be more understanding than you think. Also I always try and remember that life is a gamble - just because you have this chronic condition now doesn't mean you are destined to be a terrible worker or a burden for life. Everything can change in a moment - you will get a transplant at some point, just like at some point any other previously healthy person may have a life changing accident or illness. Decent employers know that and they also know that work isn't the biggest/only thing in their staffs lives

They absolutely cannot sack you @queenofwobbles I had only told my direct line manager that I had kidney problems when I crashed. I have had four months off and everyone has been lovely. You will feel much better once you’ve taken that first step. I agree wholeheartedly on it not being a disease that people have heard of.

@SandysMam ha! I wish! It’s been really good so far as I can then do other stuff when I’m off the machine. How are things with you? You sound much more positive!

Work-wise, for me it was important to have it on paper from OH that I wascovered by the disability discrimination act. Freaked the bejesus out of me at the time. But important.

And coming back to the hobbies theme. I started off thinking that I needed to rest a lot to feel less tired. But actually sitting around resting didn't help in the slightest. I needed to do high concentration work in shorter blocks, work shorter days, and sleep in where possible. And don't underestimate how exhausting socialising in groups can be.

Thank you everyone there is some really good advice here. Glad the consensus is work can not give us the sack! I will look into the disability discrimination act. Feeling a bit more like I can get through this now...

@OrganTransplant123 I am doing ok, thank you for asking! Feel more positive since I went on the list a couple of months ago, the build up to getting to gfr 15 was worse then actually being here because I have been worried about it for so long if that makes any sense, and now it’s here, I’m ok!!
Don’t get me wrong, I still wake up with that feeling of dread and I am still gutted about it all but I can either get on with it or crumble and I want to try to make the best of what I do have, which still consists of lots of good things! I read a good thread earlier about chronic illness which was quite inspiring, will link it…

www.mumsnet.com/Talk/am_i_being_unreasonable/4097150-To-ask-for-positive-stories-of-living-with-chronic-illness?msgid=107280814#107280814

Hi @SandysMam I understand what you mean. It's a massive mental burden and I sometimes wish it would just hurry up and happen instead of being stuck in this limbo! I am jealous of people who have renal failure out of the blue - I would swap that for my own situation of years of seemingly pointless blood tests and worry. I think the worry is part of who I am and a coping mechanism - prepare for the worst and hope for the best. You are totally right we can get on with it or crumble. I love your positivity and that you started this thread. Glad to hear you are feeling more relaxed about it all and glad to hear you are now on the list!

Completely agree that the mental burden is worse than the physical aspects. People tend to gloss over that and concentrate on the physical stuff. Lots of people have been ‘you are so brave having blood tests’ etc etc. Blood tests are the tip of the bloody iceberg!!! I have a friend who after my liver transplant said that she couldn’t have done it. Well you would or you’d have died! I don’t think people get that there isn’t any choice!!

Hello! I have stage 3b kidney disease, so I'm still earlyish stages. I was diagnosed after the birth of DS2, 3 years ago. I was admitted to hospital a week or so before he was born with really high blood pressure and they thought it was pre-eclampsia, but managed to get everything under control with bp tablets. One nurse was absent mindedly looking through my notes and said "oh, your kidneys aren't working very well, its probably just your blood pressure". I forgot about it and about 5 weeks or so after DS2 was born my gp called to say my blood tests showed my kidneys weren't working well, so he sent me for a scan and it all came back as CKD of unknown cause. Looking at past blood tests my consultant nephrologist said it looked like it had been going on for at least the past 10 years but nobody had said anything about it, which is a shame as perhaps if it had been picked up earlier then we could have showed the progression? So anyway, here I am, 38 years old and my eGFR has been pretty stable in the low 40s for the past couple of years.

Overall I think I'm doing ok, I have a fair bit of fluid retention around my eyes, which makes me look old, and in my feet and hands, my blood pressure is pretty much under control, but I do really struggle with lethargy and anaemia. Fingers crossed for a few more years of stability.

Not many people really know about my ckd, so it's nice to find this thread!

Hi @TheMostHappy welcome! Hopefully you will stay well and stable for a good long time and at least you know about it so you can put steps in place to protect your remaining function! Mine wasn’t picked up on for ages either which makes me a bit cross as I would have done stuff differently had I known!

@OrganTransplant123 I completely agree, your friend sounds like a div