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!!

Hello all,
Glad to hear some of you are making progress: not so glad to hear some are having tougher times.
Thinking of you all.

Hi everyone is anybody out there?! I am here keeping the thread alive I am still waiting to hear from transplant team - worried there could be delays due to COVID. Still no update on a shed or which dialysis road I will go down - think I'd prefer to make this decision at the last minute! Hope you are all well. @SandysMam I hope you are hanging on in there?

Hi @queenofwobbles
Sorry you're still waiting.
My new kidney is still magnificent. I'm more well than I've been in a very long time. Hope you get to follow a similar path. X

Hi everyone! Nice to hear from you guys and lovely update from ShinyHat!!

Do you mean wait to hear if you’ve been activated on the list @queenofwobbles? That must be really frustrating if you have done all the work up, keep chasing.

I’m doing ok, will be starting PD in the next few months I imagine but feeling ok about it all. I think it will be a relief in a way, feeling pretty rubbish now, everything feels like hard work! I am still enjoying life though and feel lucky I am still able to do that!

Hi @ShinyHatStand I am so glad to hear that! Its great to hear you are doing well and maybe there is hope...

@SandysMam I have not got around to the work up! I am still waiting to hear from them. In fact I have had no letters or anything since my last appointment which was a while ago so maybe I better chase them up... Sorry to hear its getting tough. I know what you mean about waiting for this limbo to be over. It probably wont be as bad when it happens! Glad you are still sounding upbeat about it all. Have you found your shed space? I am feeling ok(ish) and trying to be positive about that but do wonder if Ill need to drop to part time at some point (and if they will let me!).

Hi all,

I’m still not on the list either @queenofwobbles The coordinator rang to say I’d been activated then I told her that I’d just had a positive mrsa swab and I was immediately suspended! I’m mrsa clear now but DH has covid. Honestly, I’ve had such a ridiculous time recently with various things that if I typed it all out it would sound unbelievable. DH is quarantined away and I’m trying my best to avoid covid.

Great update @ShinyHatStand glad all is well.

I try to keep the thread alive but feel like I have nothing to contribute really. My kidneys are not yet rubbish enough to need dialysis or transplant, so I'm useless on that account.

Hope you're all battling along, or just getting by. Both are good.

@OrganTransplant123 I wondered how you were doing now we are in Autumn with school back etc. but it sounds like you are really going through it at the moment! Can not believe this about the transplant list. Hope it gets resolved asap. Glad you are able to quarantine your DH, is he ok? Fingers crossed you can keep it at bay - this all sounds really stressful.

Hi all.
Thanks for the kind words.
I did a big charity event with my live donor yesterday so it's been an emotional few days. Bit overwhelmed by how supportive friends and family have been. Although if one more person tells me that I'm "inspirational" I may have to slap them 😂😂😂

Hi @OrganTransplant123 oh bless you, hope your DH is ok? Must be really scary for you all, remember, when you’re going through hell, keep going!! It will all pass eventually. I never even had a swab for MRSA, I’d forgotten about that bad boy with Covid!

Hi @FuzzyPuffling glad you are still doing ok, hopefully yours will be ok for a long time yet.

Hope everyone else is doing ok.

Ps @ShinyHatStand…you are inspirational

Just popped in to say how inspirational you all are

All is ok here, plodding along. Have had a migraine for days now, and my blood pressure is crazy(180/125), so have to go to hospital tomorrow to get checked out. DH is bugging the life out of me, insisting I go tonight, but if there was concern, I'd have been told to go by the doctor who saw me.

Hi @AdditionalCharacter have been thinking of you too. Duck for cover if @ShinyHatStand sees your opening line ha ha! Hope the hospital goes ok, your DH is probably stressing you out nagging which is making your pressure go up!! Hopefully they will get on top of it today and get rid of that migraine

Hope all goes well at the hospital @AdditionalCharacter that bp does sound v high indeed.

You’ll be swabbed for mrsa before they fit your tube @SandysMam then every 3 months or I certainly have them every 3 months.

Nice to see you @FuzzyPuffling glad your kidneys are holding up!

One year today since I was admitted for my transplant.
It feels a bit like all that happened to someone else.

Not long back from hospital. They think the increase in my chemo tablets is causing high blood pressure, it was 190/127 this morning. So decrease in chemo, have BP tablets to take, appointment to see nurse in two weeks for bloods and BP check and seeing my consultant the end of next month. CT scan on kidneys, they look ok.

Happy kidneyversary @ShinyHatStand.

I've now been diagnosed with some heart problems (ventricular arrhythmia) . Is there no end to my wonky body?
(At least my liver is looking good!)

Glad there’s a plan to deal with the high bp @AdditionalCharacter It sounds frustrating to drop the chemo down though.

Sorry to hear of your heart problems @FuzzyPuffling it feels like one thing after another sometimes.

Happy anniversary @ShinyHatStand

Thanks @OrganTransplant123
I had an awesome moment yesterday when I cycled to the top of a quite big hill and could look over to the hospital building about 10 miles away where I'd been coming round from surgery exactly one year ago.
#WhatADifferenceAYearMakes

Ah that’s so lovely shiny!! You know what I’m going to say….
Happy kidneyversary, I really hope all of us that need one are in the same position soon but for anyone further off that, I am still happy and enjoying life even close to the end (of my kidneys!) so don’t worry too much!

Sorry to hear your news @FuzzyPuffling.

I often feel the same, no end to things going wrong with my body. As I have a rare condition, I get a few doctors get excited about it and then make me feel like a freak show. It's very overwhelming.

What a lovely way to see the year out @ShinyHatStand.

Thank you for all your good wishes.
I do wonder if it is all to do with my lupus, but no one seems interested in seeing if they can join the dots.
Ah well, onwards and upwards, as they say.

@ShinyHatStand

Thanks *@OrganTransplant123* I had an awesome moment yesterday when I cycled to the top of a quite big hill and could look over to the hospital building about 10 miles away where I'd been coming round from surgery exactly one year ago. #WhatADifferenceAYearMakes

AWESOME!!!

If anyone is around and feeling kind, please could you advise me on the below? I’ve posted a thread and then remembered this thread was here and hoped you wouldn’t mind me crashing it 😬

Having pains in my left side/flank, just above the hip and heading round towards the back slightly. Feels crampy and warm, and has been happening intermittently for the past 48hr. I’m due on my period any day so did wonder if it was related. Having the usual heavy sore boob pains and tiredness associated with my period. I’ve had these side pains briefly here and there over the past year, usually close to my period IIRC.

Had a call from my GP earlier to discuss my blood test results from a couple of weeks ago (routine for blood sugars and full blood count) and she told me my red blood cells are ‘smaller than usual’ which was odd language to me, but I assume she meant I had a low red blood count. She’s asked me to get an iron blood test. Could this be related to my side pain, which I assume is roughly where my left kidney is located? Does anyone have any experience of this? For full disclosure I’ve lost about 20lbs in weight by doing intermittent fasting for the past four months, so I’m just above a healthy BMI.

Does that sound like kidney problems, an infection, stones, or even CKD? My mum was diagnosed with kidney failure a few months ago, so could it be something hereditary?

Thanks so much for any advice x

And thanks for this thread, I’ve been lurking since my mum’s dx and it’s been so comforting to hear PPs talk about dialysis going ok and still living their lives 🙂 best of luck to you all x