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!!

A random point which I remembered earlier and thought I should post on here...

For those new to dialysis, if you are using a room at home to store equipment and / or do the dialysis in, you are entitled to a council tax discount. Not means tested or anything to do with benefits, you just fill in a form. Our LA basically move the property down a band so it's worth a couple of £thousand a year.

That’s super helpful to know Renally!! Thank you!

Can I ask a question? In the mornings, can your DH still help get the kids ready for school etc? I’m trying to figure out what will be possible on dialysis. Could he look after them for a weekend alone if you went away for a break, that kind of thing? Obviously I am talking about capabilities on dialysis, not whether he is actually competent at parenting which might be another story all together! I am trying to imagine how our lives might look but I find it really hard to visualise when most of the people I see at the unit look so unwell (albeit a lot older). Hope this makes sense?

@SandysMam

That’s super helpful to know Renally!! Thank you!

Can I ask a question? In the mornings, can your DH still help get the kids ready for school etc? I’m trying to figure out what will be possible on dialysis. Could he look after them for a weekend alone if you went away for a break, that kind of thing? Obviously I am talking about capabilities on dialysis, not whether he is actually competent at parenting which might be another story all together! I am trying to imagine how our lives might look but I find it really hard to visualise when most of the people I see at the unit look so unwell (albeit a lot older). Hope this makes sense?

Good questions.

The PD machine usually runs approx 11pm-8am. He doesn't set an alarm and so usually sleeps until 9am and doesn't contribute to the morning routine or school run etc. But he could in theory if he tried! although he absolutely hates getting up - obviously the tiredness is worse with end stage RF than before, but even before dialysis he wasn't a morning person. His work is flexible and WFH at the moment so he generally starts work about 10am and isn't fit for much before that. But if definitely depends on the kind of person you are... are you a morning person? Do you do the school run now?

Leaving them alone for a weekend hasn't happened post dialysis. I'd have to give that some thought if a situation arose but I'd say no probably not. I would be worried about him being attached to the machine all night and so not able to respond to the kids if they needed someone in the night.

During the day he would be fine, he wouldn't do any epic trips out but they would probably just have a quiet weekend going to their clubs and watching films etc. I'd probably feel mega guilty leaving them and so sort all the meals out etc before I left.

That last message maybe sounds worse than it should. I do go out and it's totally fine! He does evenings and bedtimes and is a functional person during the day. Mornings are his worst time. Between 10am & 10pm he is largely ok.

I think much of it is about balancing your energies. Work,family,fun,rest. I try do as much as I can at home so he doesn't "waste" energy on crappy housework. And I encourage him to find a balance -eg on Saturday he is playing cricket in the afternoon and so he probably won't do much on Sunday - watch a film or 2 with the kids probably.

In a couple of weeks times he is going on a stag do - he will enjoy that but it's a 3 hour drive away so I will drive him (the drive would tire him a lot and ruin the weekend for him).

We do make lots of small compromises without even realising, but I bet you already do that anyway. At least the benefit of overnight PD is you don't lose time dialysing during the day.

Here is the equipment in the corner of our room. It is not set up for tonight yet so the bags on the top of the machine are empty (left from disconnecting this morning). The cardboard boxes contain bags of fluid which get connected up each night. The machine warms them up and pumps them in. We have an en-suite so it drains out straight into the toilet.

Morning! Thank you for all that! I know everyone is different but I take little nuggets of positivity from that (cricket, stag do!!) and think right, you probably will be able to do the school run etc which will definitely be what I will need to do due to DH’s work. He has no flexibility really and has to be there early so there isn’t really an option on that front. There was a thread about money making life easier and it really does. If my DH didn’t have to work then this would be so much easier but at the same time, maybe having a purpose and having to do stuff is what pulls you through in these times? If I didn’t have to get up, maybe I would fester in bed and ultimately feel worse.

That equipment corner scares me to be honest, it all looks so medical to have in your home but I know again, you do what you have to do to stay alive! Yours looks very organised and neat though!

You sound like such a lovely partner Renally, he is lucky to have you!

She is a lovely friend just rather thoughtless! @SandysMam

I thought you could only get the discount if you devoted an entire room to dialysis? I have it all in the bedroom and as it is still a bedroom I thought we couldn’t get the discount.

I know I’m on a different type of dialysis but I’m doing the school run. I couldn’t do it while travelling to the unit so that’s one of the reasons I prefer home dialysis. I also think I’d be fine for DH to go away but my children are older and at the moment I’m feeling ok energy wise. My HB was v low but it’s back up to 10.5 and it makes such a difference.

@OrganTransplant123

She is a lovely friend just rather thoughtless! *@SandysMam*

I thought you could only get the discount if you devoted an entire room to dialysis? I have it all in the bedroom and as it is still a bedroom I thought we couldn’t get the discount.

I know I’m on a different type of dialysis but I’m doing the school run. I couldn’t do it while travelling to the unit so that’s one of the reasons I prefer home dialysis. I also think I’d be fine for DH to go away but my children are older and at the moment I’m feeling ok energy wise. My HB was v low but it’s back up to 10.5 and it makes such a difference.

Ours is in the bedroom and we get the discount. Overnight PD machine would never go anywhere except the bedroom so I think it makes sense. It's about if you use the room for dialysis, I don't think it matters what else you use the room for.

Oh I feel bad for being mean to your friend now sorry @OrganTransplant123!!
People just have no idea really about what we go through and how lucky they are just to have a body that works!

School run is fab, if I can manage only that then I would be satisfied (ish!).

Have a good day everyone!

@renallychallenged thanks for sharing this - you are my new dialysis hero along with @organtransplant123 ! It sounds like if you are otherwise healthy there is a good chance you can carry on relatively normal. It is great to see your DH set up. Does that mean he uses 7 of those boxes a week? I was also going to ask whether you can do home dialysis if you do not have a spare room - so in your own bedroom (currently in a tiny terrace and had planned to move to a family home - but crazy covid house prices took over!). Thanks for the council tax tip that would be a huge help.

Can you do much exercise on PD with the fluid/catheter - things like yoga where you have to bend? Guessing you should avoid high impact stuff?

@organtransplant123 do you mind me asking how many sessions do you do each week? Can you do longer (gentler?) sessions? And do you feel like you have much of a say in your treatment plan? Glad you have a handle on your Hb. My previous consultant was always very stingy with handing out the iron (whereas the couple of times I went through the anaemia team they were always very generous!). I am hoping the low clearance clinic will be more sympathetic to my iron pleas!

@queenofwobbles you need Epo injections as well as iron for kidney related anaemia. If you don’t have them and are low clearance you need to insist, they are a game changer.

Ooh thanks @renallychallenged I’ll see about applying.

Don’t worry @SandysMam I brought it up!

I’m doing 5 sessions @queenofwobbles 3 hrs on the machine. I was able to choose from a menu of options. I always felt ill after the sessions on the unit but the home machine is gentler and doesn’t leave me feeling sick or tired. One thing I would say is that although it is 3 hours on the machine, the set up takes time. It’s 10 mins to set up the machine, 23 minutes while it gets ready, 10 minutes to prime the machine. 10 minutes to get on and 10 to come off. You need to allow for 4 hours although you can use the 23 minute machine time to do other things. It’s better for me than the unit because there is no travel time and I used to have to come home and go to bed to sleep. Now I’m off the machine and feel fine.

Yes I started epo after dropping below 20. I used to have to inject myself in the leg but now I can give it while on the machine.

Thanks @SandysMam I will make a note to ask them about epo. My problem a lot of the time has been rock bottom ferritin but borderline Hb (but they never seem to consider the ferritin). It has been a battle getting iron when I needed it. Hope at low clearance I won't have to fight for it.

You make it sound so manageable @OrganTransplant123 although I know its a huge chunk of your week. It must be nice to have a night or two off unlike with PD. I guess both have pros and cons. I like the idea of a menu of options - surely one of them has to fit in with my life. Can you switch your days and times around or is it quite a strict regime? I read some stuff online about how some units encourage HD patients to exercise while on the machine - stepping or cycling! Have you any thoughts on that? I can imagine I would spend the time binge watching tv or lurking on mumsnet (or possibly some work e mails or the hobby)! Not many people mention home HD so it is great to hear your take on it.

You can switch the days around to suit you but you can’t have more than one day off together except on special occasions! If bloods are good then they’ll let you have a weekend away without the machine but the general rule is that you have to space out the days off.

I can’t imagine exercising on the machine! It’d be a good use of time though! I do a mix of work, home admin- supermarket food ordering and meal planning, etc, mumsnet, iplayer.

@OrganTransplant123 this is all really useful information thank you. One of DHs biggest fears is he will have to switch to HD but you make it sound very manageable.

Exercise on PD (sorry can't remember who asked) - totally fine in theory but problems are the volume of fluid inside you can be uncomfortable for jiggling around too much. DH drains out most of his fluid before playing cricket to make it more comfortable. Also you need to be careful not to get a hernia so not too much heavy lifting. But the renal team very much encourage you to do what you enjoy so there is probably a way around most things. I'm sure yoga etc would be fine.

Morning everyone! Feeling pissed off today with all the talk of the Indian variant. People keep saying “you’ve been vaccinated you’ll be fine” but they don’t seem to understand the transplant list will be suspended again if things get out of control amongst the unvaccinated. I need to cons off mumsnet really or just come on for you lot!!

Let's keep everything crossed that they don't pause the transplant list again @SandysMam

Got my operation date, middle of June. Have 4 weeks to lose at least a stone.

Thank you!!

Oooh I might join you!! What is your plan of action?
Hope you’re feeling ok about the op xx

The change that I made that helped the most with weight loss (along with obsessively counting calories) was swapping my evening on the sofa for evenings out walking listening to low brow detective fiction audiobooks from the library.

They say that as a rough rule of thumb you use 100 calories per mile. I now often walk 6 miles after dinner.

But I started small. 30 mins walk after breakfast. 30 mins in the evening.
And I did it everyday regardless of weather. As soon as I let myself have a choice I start wimping out.

The stuff other people come out with @SandysMam - so ignorant of the world beyond them. Keeping everything crossed they can keep transplant services open. It is shit enough going through this without covid on top.

Good luck with the weight loss mission @AdditionalCharacter !

Just cutting back really. I did intermittent fasting which is great, but it's hard to do when I work night shift as well. I might try do more walking as well. Usually in the summer I walk the 2.5 miles to work and back, but a bit hard after a 12 hour night shift.

Warmer weather = more salads anyway.

Just popping in to offer my support to those awaiting transplant/ other surgery, and fervently hoping that covid doesn't stuff it all up for you. Anxious times indeed. Good luck and love!

Hi all

Welcome @TheMostHappy sorry I missed your post before. My kidneys also went wrong during pregnancy. I have a rare disease where I knew kidney problems were a possibility but my second pregnancy kick started it. Similarly, they diagnosed pre eclampsia but post birth, my blood pressure/kidneys didn’t return to normal.

Good luck to those trying to drop a few pounds. I’m still trying to go the other way. I’m on the v edge of a healthy BMI. My DH is trying to drop some weight so cooking something to suit us both is a nightmare!

I had a letter for the specialist hospital but it doesn’t seem to be the right clinic. I saw my usual consultant today and he thinks they’ve booked me into a different clinic because of my liver but that it is to discuss kidneys. I hope he is right! I’ll be gutted if it isn’t!