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Rubbish Kidneys Support Thread

996 replies

SandysMam · 11/07/2020 11:43

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 Grin) 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!!

OP posts:
AdditionalCharacter · 12/03/2022 09:01

Thanks @SandysMam. Bloods came back fine, so nothing sinister (didn't think there would be), still have to have some investigation but not too bothered by that. It's typical for me. Hate how my body hates me.

SandysMam · 12/03/2022 11:58

Ah that’s great news though, nothing sinister IS your body loving you!! Try to enjoy the weekend, bit of respite til the next thing Grin

OP posts:
FuzzyPuffling · 12/03/2022 17:55

Ah Additional I am so glad the tests came back ok. Hope the worry levels have returned to normal.

TheArtfulBlogger · 12/03/2022 22:49

This reply has been deleted

Message withdrawn at poster's request.

queenofwobbles · 14/03/2022 11:39

Just popping on to say I am glad to hear its nothing sinister @AdditionalCharacter. Fingers crossed some good news comes your way soon!

SandysMam · 20/03/2022 14:36

Hi everyone, how are you all getting on? Just been for a lovely walk, daffodils looked so beautiful, spring is here! Felt very lucky to be be able to enjoy it, this time last year I couldn’t imagine I would be on dialysis and actually enjoying life. Not all plain sailing and sure it won’t always be, but for today, am feeling very annoyingly #blessed!!
Hope everyone else is doing ok, how are the new kidneys settling in @MissKittyFantastico84 and @OrganTransplant123?

How are you doing @queenofwobbles? Kidneys still holding steady?

OP posts:
SandysMam · 20/03/2022 14:50

P.S I don’t want people thinking I have turned into a ridiculously positive person and this thread is a no moan zone. Moaning is absolutely still allowed and encouraged!

OP posts:
FuzzyPuffling · 20/03/2022 19:30

I had my latest kidney function tests this week - they are holding steady for the time being! Good news indeed.

So I've been out digging the garden and planting roses to celebrate!

SandysMam · 20/03/2022 20:02

Oh that’s great news fuzzy, you can relax now for a bit (until the next test!). Such a nice feeling!

OP posts:
FuzzyPuffling · 20/03/2022 20:43

Thank you Sandysmam. It's quite a relief to only be a couple of points down on my eGFR. 😁 Every test causes such anxiety!

AdditionalCharacter · 20/03/2022 21:26

Daffodils and a little sunshine certainly cheers me up a little

Glad you're doing ok @FuzzyPuffling

OrganTransplant123 · 21/03/2022 10:14

Hello everyone,

@AdditionalCharacter I’m so pleased that your tests came back ok. You have been through the mill.

Great news @FuzzyPuffling enjoy the roses.

Glad all is well @SandysMam you sound full of the joys of spring! A bit of sunshine is wonderful.

AdditionalCharacter · 21/03/2022 12:38

I feel like I own the mill, never mind going through it Grin

ShinyHatStand · 24/03/2022 20:06

Hi All.
I've also had another set of decent blood tests.
And have been out enjoying the sunshine.
Doing my first organised sporting event at the weekend - eek! Just hoping to make it around in one piece tbh. Weather is looking perfect.

SandysMam · 26/03/2022 12:39

Good luck Shiny! Enjoy your event!

OP posts:
AdditionalCharacter · 26/03/2022 18:18

Hope your event has gone/is going smoothly. It's a lovely weekend for outdoors.

ShinyHatStand · 27/03/2022 19:19

Thanks @SandysMam - it was fab. Much quicker than I'd expected 😀. And lovely company along the way.
Have 4 more events booked this year. Eek!

Has anyone on here any experience of the transplant sport events?

queenofwobbles · 28/03/2022 14:51

Hi @SandysMam! sorry for the late reply. Glad to hear you are feeling #blessed - it's always great to hear the positive side of dialysis!! I dont have much to report - still here still knackered! About to be activated any time now (delays at hospital). Trying to stay positive (things could be worse). I still daren't tell people in case they think I am after their kidney! Hope everyone is getting on ok Daffodil Daffodil Daffodil

ShinyHatStand · 22/04/2022 22:44

Hi everyone.
how you all doing?
things are going good here. Getting back into the swing of getting irritated by everyday nonsense instead of kidney stuff. It’s quite nice tbh.

FuzzyPuffling · 23/04/2022 07:28

Hello shiny and everyone. I'm just bumbling along here, mostly gardening and a bit of dressmaking stuff. And trying to decide whether to move house or not. Kidneys appear fairly stable at present, which is good..

ShinyHatStand · 23/04/2022 09:34

Ooh house move!
what are the pros and cons?

FuzzyPuffling · 23/04/2022 21:00

Pros: I like my house and garden a LOT.
Just had a gorgeous new kitchen.
It's close to the coast for bodyboarding.
DD2 is moving with her family very close to DD1. We could move to be closer to them all.
Cons;
Possible building of 4 houses in the field behind me.
Where I live is a small remote village. I find it very insular and small minded. DH and I are quite lonely and covid has made it worse.
I can't find anything I want to buy.
I don't want to do anything in a hurry and later regret it.

ShinyHatStand · 25/04/2022 12:58

Tricky.
Might the 4 houses bring in people to make things less lonely and add a bit of diversity to the local area?
And I guess there is nothing to stop you keeping an eye out for the perfect house. Nice to be able to browse without needing to move quickly?

FuzzyPuffling · 25/04/2022 17:56

Definitely doing the browsing thing.
I did think the same about the new houses, but diversity, nope! Not round here! (Can you tell I find it a bit stifling?!)
Another plus, I'd be much nearer the hospital (as opposed to 1.3hrs drive at the moment)

AdditionalCharacter · 25/04/2022 18:48

Doing fine here. Have my 3 monthly appointment next month and hopefully an MRI to determine if tumours have grown, shrunk or stayed the same.

Im debating moving or not. Due to come out of our 5 year fixed rate, and not sure I want to remain here and get a little extra borrowing, or move somewhere where everything is already done. I hate my garden and kitchen.