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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:
SandysMam · 07/04/2021 17:44

Glad it went ok, MRI’s can make you feel very vulnerable really, especially naked ones! Well kind of naked!!
Can they do anything for the pain you have been in?

OP posts:
nailsathome · 07/04/2021 20:23

Glad it went ok @AdditionalCharacter, hopefully you'll be able to get help with the pain now

ShinyHatStand · 08/04/2021 15:09

Hi all.
I'm doing ok. 3 very exciting things happened today

I booked my second vaccination appointment!
The size 12 jacket I ordered fits!
The size 10 jeans I ordered fit!

I haven't been a size 10/12 since I was at school 😁

SandysMam · 08/04/2021 15:46

Hi @ShinyHatStand swit swoo!!!

Sounds like it might be an expensive time for you, whole new wardrobe! Do you think it’s the cycling?
How’s the kidney? I went for a check up last week, eGFR 14 now but feeling ok and should be activated on the list soon after the final checks. So weird as really thought I would be in pieces once I went below that magic 15, but I feel quite calm. I just have to be ok for my children, no other option really!
Hope everyone else is ok

@MissKittyFantastico84 haven’t heard from you for a while, hope you’re doing ok.

OP posts:
ShinyHatStand · 08/04/2021 15:49

Hi @SandysMam
You don't want to know how much money I spent in a bike shop yesterday. New clothes are the least of my spending worries 😂
Still the money I've saved on my annual train season ticket has to be spent somewhere right? I owe it to keep the economy going!

Will have bloods done next week. But reasonably confident that the kidney is still splendid.

ShinyHatStand · 08/04/2021 15:50

Oh and I booked a holiday! Uk based for a week over the summer.

SandysMam · 08/04/2021 15:54

You have a new kidney and a second chance at life, spend it like you stole it!! But don’t go bankrupt and blame this thread Grin

I am really tight with money as worry so much about what it will be like when I am sick (DH won’t get paid) but I definitely plan to live a bit more if I get through all this. WHEN I get through it.

A holiday sounds amazing, you deserve it!

OP posts:
FuzzyPuffling · 08/04/2021 17:13

Just popping in to wave at you all and applaud the bravery I read of on here. What an inspiring lot, even if you don't know you are!

SandysMam · 08/04/2021 17:31

Thanks fuzzy. Not really brave, no choice really but maybe that is brave! So I’ll take it!

OP posts:
FuzzyPuffling · 08/04/2021 17:54

Ah, but your attitude is brave, SandysMam and that's what counts.

MissKittyFantastico84 · 10/04/2021 12:20

Hey @SandysMam I'm still here. Haven't deserted you bud xx

Things are moving positively with me - a couple of my potential donors are matches and one amazing person is going for their final donor tests at the end of April.

It's a strange time for me right now and a lot of emotions are flying about. Just trying to move forward and be grateful that I currently feel good. Once again, same as you SandyMam - surprised at myself! Thought I'd be a bloody wreck at this point too. xxx

Started work as a freelancer too after seven years in one job. Seriously, by the end of this year I think I'll be capable of ANYTHING.

Lots of love to you all as ever. Hope you're moving forward with more support and information @nailsathome xx

x

SandysMam · 10/04/2021 16:47

Ah Hi Kitty! I always worry if I don’t hear from regulars for a while!
That is fabulous news about your donors, I was at unit last week and someone came in for post transplant check so they are happening! I heard them say they were a month post and feeling fabulous!
Will keep everything crossed it happens for you (and me!!). Let’s just keep going on this rollercoaster and enjoy the bits we can!

OP posts:
SandysMam · 10/04/2021 16:48

Also I love that you are moving forward with your job and not letting this stop you!

OP posts:
AdditionalCharacter · 10/04/2021 17:25

@SandysMam no they can't do anything for the pain, only thing is to shrink he tumour that's pulling on the tissue. 2 years now, it's exhausting. Just waiting for MRI results, best case scenario (from my point of view) is they remove my kidney, because the tumour isn't shrinking.

@ShinyHatStand well done on the weight loss. I could really do with some thinspiration.

Had my 2nd vaccine yesterday and feel so bloody rough today. Have a raging temp which is causing me to throw up when it peaks. Trying hard to keep it under control. Hopefully just a 24 hour thing. Has everyone at least had their first one?

nailsathome · 10/04/2021 18:24

All of you are truly admirable for your bravery and determination. I love that you aren't letting your kidneys get in the way of living.

Fingers crossed that those waiting for donors get them soon. I'm so rubbish with remembering who has said what so sorry for not name-checking Sad

I need a bit of motivation for weight loss too - I only need to lose around a stone but I'm finding it so difficult, especially since the kids got eleventy million Easter eggs each!

I had my ultrasound which showed everything is normal and no blockages so just waiting for the gp to tell me what's next.

SandysMam · 10/04/2021 18:27

@AdditionalCharacter did you have the Pfizer? Apparently the second one makes you feel the worst! I have mine soon, dreading it! It will pass, hopefully you get some sleep tonight and will feel better in the morning Flowers

OP posts:
AdditionalCharacter · 10/04/2021 18:29

Yes Pfizer. I'm hoping it doesn't goon too long, I'm back at work Monday night and won't be able to do it if I'm ill.

SandysMam · 10/04/2021 18:53

Oh good luck back at work! I know you have missed it!

OP posts:
FuzzyPuffling · 10/04/2021 18:54

I had my first vaccine mid Feb (AZ). I was feverish and asleep for 3 days, then fine for a day, then had a lupus flare (no idea if connected or not) meaning real fatigue for another week.

I am SOOOOOO glad to have had the vaccine though!

Dose 2 due mid May, but the local GP hub are saying their vaccine deliveries are a bit out of kilter, so they may well have to rearrange appointments.

AdditionalCharacter · 11/04/2021 12:28

Feeling slightly better this morning, very light headed but I think thats because slept sitting up all night.

ShinyHatStand · 14/04/2021 08:21

This month's bloods are in... best yet 😁😁😁

Might celebrate by going for a walk 😂

FuzzyPuffling · 14/04/2021 17:08

Shiny that's great! Big WOO HOO for you and your bloods.
And AdditionalCharacter I hope you're feeling better now.

AdditionalCharacter · 14/04/2021 20:55

Excellent news @ShinyHatStand, hope you enjoyed your walk if you went on it.

I'm feeling fine now thanks, just a stupidly painful arm. Being back at work is great, but can feel it by the need of my shift. Still waiting for MRI results, my consultant is never in a hurry.

ShinyHatStand · 14/04/2021 21:15

Thanks guys. In particular thanks for not minding me being so gloaty. Feels a bit weird when some of you are having such a shit time.

Clinic appointment by phone tomorrow. Not expecting any surprises.

And in other gloaty good news... after several rounds of bull purchases, returns and an online fitting via zoom... I now have 3 bras that actually fit me. Life is definitely better in a bra that fits 😀

ShinyHatStand · 14/04/2021 21:16

"bulk purchases"
No farm animals were involved in my bra buying 😂