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!!

Didn't want to read and run, but I have nothing useful to say except that a routine full blood count set of bloods will usually (IME) measure the 'red cell distribution width' separately to red blood cell count. They're not the same thing.

Hope you figure things out soon. X

Hi @CrampyFlank there are various things that can go wrong with kidneys but my experience of ckd is that I’ve never had any pain. Most elderly people have impaired kidney function so it depends on how old your mum is on whether you need to be concerned or not. Also some types of ckd never reach the stage of needing dialysis so don’t panic yet.

So kind of you both to answer. My period came today and the pain went away almost as if by magic. I’m going to ask the doctor for some hormone tests, I’m reaching peri menopause age so I guess the wheels are starting to fall off a bit… I’ll ask for a kidney function test too, just in case.

My mum is 74 and was only diagnosed quite recently. It was very out of the blue as she refused to see a doctor for 20 years, and I think I’m transferring a lot of my anxiety about her condition to myself and jumping to conclusions! Going to try to relax and wait to see what the tests say.

Thanks v much everyone, you’re all superstars for carrying on with such energy and determination despite your kidney problems. This thread has been a lifeline to me when worrying late in to the night about my mum. It’s given me hope that we can have some good years together while she still responds well to the dialysis. Best of luck to you all x

Hi guys
How is everyone?
I'm still doing well. Another month of lovely creatinine levels. My pre-loved kidney is awesome 💪

Finding it harder to keep up with rather exercise now it's getting dark earlier and is generally more cold and damp. But I'm determined not to lose the fitness I've built up over the summer.

But today is a house tidying day. It's a shit tip 😂

Hope you're all doing ok. Chin up and all that.

Hi everyone! Sorry as always the thread dropped out my list so didn’t see the posts!

I love hearing about your vinted kidney @ShinyHatStand , easy to get lazy in the shitty weather though!! Loads of people are selling Peletons now after they have become expensive clothes horses, you could pick up a good deal?

@CrampyFlank welcome, so glad the thread has been a comfort. If your mum is in otherwise reasonable health there is no reason why dialysis won’t work well for her, just be realistic in your expectations. Also second what @OrganTransplant123, I sometimes have achy sides but most of my kidney failure experience is painless, thank goodness! Try to not to let worry rule your life, none of us are getting out of here alive so just enjoy the good times, you really do just deal with the shit when it comes!

Hi @SandysMam
I've been dithering about getting a turbo trainer to put my lovely road bike on. But indoor exercise usually makes me miserable, so for now I'll try switching from cycling to running in the dark evenings.

And I'm still walking loads. I think we really underestimate the benefits of walking.

Walking is fab! Apparently a brisk 30 minute walk is the best thing for lowering blood pressure. I think outside light really helps knock any depression on the head for me too, I really feel it as the seasons change and am mindful of that as we go into winter.

Couldn't agree more @SandysMam
Walking kept me sane through last winter during the early month of my recovery

Hi everyone,

You are so motivational @SandysMam ! I’ll get off the sofa in a sec do some gardening and then go for a walk before it starts raining.

Did I say I’ve been activated on the list? I can’t remember! I’m still having to keep an eye on my weight and keep up with the extra snacks. Dialysis must burn calories or my metabolism has been reset as I’m sure I’m eating more than ever but struggling to put any on.

Just a hi from me and wish you all well. I forgot about this thread and it's been nice to read all your news.

Ah @OrganTransplant123 that’s great news! You got there! A step closer hopefully.

Thanks for saying I am motivational, being positive does help although I don’t always feel it. I am like @ShinyHatStand, an inspiration

Hi @renallychallenged nice to hear from you, hope your DH is doing ok!

I meant to ask @OrganTransplant123 did you all get through Covid ok? Did you end up catching it in the end?

Only on this thread would you see the terms pre-loved and vinted kidneys

Everyone sounds like they're getting by, plodding along.

Struggling to get my blood pressure to lower. Had my medication doubled, and it's still hanging around 150/110. Quite worried about the prospects of what it's doing to my already crap kidneys. Have to get kidney function bloods done next week. Keep things crossed that they're behaving. Not sure what I can do to reduce my BP if medication isn't working.

@AdditionalCharacter the only things that worked for my bp were exercise and weight loss. But then I was quite fat 😂

None of the rest of us caught Covid @SandysMam I couldn’t believe it really as I was so worried about it. I think because DH was double jabbed it was less transmissible. He quarantined away from us so that must have helped too!

Have they tried a combo of meds @AdditionalCharacter ? my blood pressure was still high on some meds. I’m on a combo of rampril and felodopine now. They had to play around with the doses for a while.

@ShinyHatStand I definitely could do with losing weight. Have been trying for weeks now, and it's not budged. Think it's my medication (amitriptyline) and shift work.

@OrganTransplant123 I'm on 16mg Candesartan at the minute, I think it's going to be trial and error. My consultant did say irbesartan, but GP just increased candesartan.

@AdditionalCharacter shift work sucks.
For me walking was the main driver of weight loss. Mainly because it kept me away from the snack cupboard in the evenings 😂

Hi @AdditionalCharacter I find stress is without a doubt the worst thing for my blood pressure…and getting stressed about it doesn’t help!! Vicious cycle!!! Bread has loads of hidden salt in too so be wary of that kind of thing in your diet.

Yeah, stress is a huge factor. Tbh I don't eat much bread, usually just have toast at work 1/2 times a week. I don't salt my food, dont have take aways, don't really drink, maybe 1-2 glasses of red wine a month, if that.

I guess I'll just have to plod on with my calorie counting. Going to try walk more as well.

Hi everyone. Nice to hear how you are all doing. I am still in limbo waiting for life on the list.

@OrganTransplant123 so glad to hear you survived covid even though it was INSIDE YOUR HOUSE!! That is brilliant news. Also brill to know you can do some gardening on dialysis!

Sorry to hear about your bp woes @AdditionalCharacter. Good luck with the weight loss mission I am with you on that one!

Good luck to you and your mum @CrampyFlank.

Ha ha! That’s exactly how I felt @queenofwobbles I was constantly thinking ‘IT’S INSIDE MY HOUSE’ !!!

Have you done any of the work up yet? I get the impression that how fast things happen depends on what unit you go to.

Everyone doing ok?
All good here. A few ongoing battles to get everyone in my household the vaccines that they're entitled to. I've finally got my third dose, but still waiting for the teens to be given their second.

Sneaking away for the night with DH at the weekend while the boys are also away overnight. Was worried it was all going to be wrecked yesterday when DH's colleague has a positive covid test, but he's in the clear. For now.

Finally feel like I'm back to a full on work pattern. That combined with the dark evenings are making it harder to exercise. I've put back on a few kgs of the weight I lost. Need to stop that. Would be such a shame if I undid all my hard work.

Hope you're all ok. X

I had my booster last week. Was ill for one day and had the same flared up arm issue like the two previous vaccines.

Have an appointment next week with my consultant. Blood pressure still being silly.

Enjoy your weekend away @ShinyHatStand

@AdditionalCharacter are you eligible for both the third dose and the booster? Lots of gps are getting the two muddled up which means that people are missing out on a dose.

Oh I don't know, I thought there was just the booster? Got it as I work in social care, rather than being CEV.