Crappy kidneys thread 2

[SandysMam]

Welcome to thread 2 for all those lucky enough to have kidney problems 😆

Kind, supportive thread for kidney related chat and the physical and mental toll living with kidney disease and general chronic ill health takes. Link to previous thread www.mumsnet.com/talk/general_health/3964834-Rubbish-Kidneys-Support-Thread?page=40&reply=117738679
which documents my personal journey from late stages CKD to peritoneal dialysis. Hoping for a transplant before this new thread is full!

Big hello to all existing members and welcome to anyone new!

Sounds frustrating @BeginningBridge. My consultant said phone the unit if I had symptoms and a positive test, but even she didn’t seem too sure what happened next! Also the voice mail gets full over the weekend so who knows if that would work! Hope they get back to you. How are your symptoms?

Glad the hospital are looking after you Shiny hope you can take it easy for a while

Just had another phone call. It's been agreed I can have an infusion but someone else will be in contact with further details.
It should take place tomorrow.
This does seem a very long winded procedure!

Definitely long winded.
I
Took me 8 phone calls with 6 different people

@ShinyHatStand goodness! I've only had 5 calls so far.
What has also surprised me is that I will need to go at least an hours drive away for it. I'm based in a highly populated area of the South East so rather expected somewhere nearer.
But I'm happy to go wherever I need to!

Crikey folks, getting anti virals sounds like a nightmare. Especially when you're not feeling well in the first place.
Hope they are quicker to work than they are to get, and you covid people are feeling better very soon.

Still no time/place for my antivirals. Have chased 111 today. Am feeling very frustrated which doesn't help when i am feeling rough anyway.

I'm definitely on the mend. Thanks.
But this heat is not helping.
And neither is the fact that my work inbox is turning into a car crash in my absence. I was already massively behind and had recently discovered we've dropped the ball on a few upcoming deadlines. Trying not to stress about what I'll face on my return, it it's hard. Particularly as I know I'll still be brain foggy.

Shiny just seen you have been unwell too!
It’s easier said than done but if you can delegate work stuff to someone, you must. Your health needs to come first. Get well soon and don’t get too stressed 💐

Thanks @SandysMam. You're 100% right. I work with lots of brilliant people and I just need to plan better so they can share the load.

Hi team!

So I finally got covid!!

Probably got it last weekend and thought I just had a bit of a cold until I tested this evening. Logged it with the transplant team but I'm probably past the antivirals cut off? Am generally feeling ok however... I'm at least six days out.

How have all the other covid patients coped with this? Hopefully I'm over the worst....

x

Hi @MissKittyFantastico84 sorry to hear this, it glad you seem to have it reasonably mildly.
I'm 8 days from first positive test. 9 days from first symptoms and feeling completely back to normal. Still have a super faint line on today's test. I haven't been testing regularly while I've had it but felt optimistic today.

No harm in phoning 111 to see if you're eligible for any treatments. Worst case you sit on hold for 3 days 😁

Thanks @ShinyHatStand - glad to hear you're on the mend! Hopefully will be the same for me - I've basically been labouring under the assumption that I've got a cold until today so I'm definitely on at least day 5 to 6 of symptoms, so I'm feeling positive ( no pun intended!)

My hospital team have been really good - I've had calls from about three people already, one at 10:30pm!! Will expect to hear maybe tomorrow about treatments from the team. Hopefully will have turned a corner for the better come the AM!!

Not going to lie though, it has shaken me up somewhat - I'm five and a half months out from the OP, and I just want to keep going as I'm going, you know? xxx

I finally received an infusion of antivirals. Initially I felt a bit lightheaded and very tired but about 6 hours later I realised I felt a lot better.

So I would definitely recommend trying to get the antivirals if you are eligible. You just need to be persistent!

Glad you're feeling better @BeginningBridge

What a massive faff that was for you!

Woken up this morning feeling much better thankfully so it seems that by some miracle, I've managed to get through the thing I've been fearing since March 2020!! Thank SCIENCE for vaccines, that's all I can say

Will see what the doctors say (if anyone calls me today that is!) but feeling lucky that it seems to be ok xx

Glad to hear you got them - how many calls in the end@BeginningBridge good luck everyone battling covid. I’ve been dodging it all this time too but rates are high at the moment like 1 in 20 people. Really pleased to hear even recently transplanted people are surviving covid!

@queenofwobbles I made 3 calls and received 6 with the last one giving me a time and place for the infusion.

My surgery also phoned 2 days later just to check that I had received the antivirals.

Tagging @AnyasAttic to make it easier if she wants to come and say hi to us.

Be nice everyone 😝

Thank you @ShinyHatStand I’ve found you 😊
👋🏻 Hello all, just lurking really to read some positives. I have a SO who is a transplant (not kidney) recipient and have been worried to death about covid. Shiny was good enough to answer my questions on another thread and invited me to pop over.
I will be reading posts with interest.

wishing everyone currently covid positive a speedy recovery.

Ah Shiny is a good egg @AnyasAttic and you are most welcome here. It’s so horrible worrying about health, either your own or someone else’s. It really is exhausting. Hope you can find some peace for a bit x

Hi @AnyasAttic

Welcome to the team! If it's anecdotal evidence that might help you, I had a transplant just about five months ago (so still on a larger dose of immunosuppressants) and I literally thought I had a cold for a week. I've had four jabs (one of each flavour!)

Hope you're all coping OK in the heat - any questions, shoot them over our way and we'll do our best to help xx

My DH had a non- kidney transplant 5 years ago. I keep threatening to enter him in the Transplant Games!

I really wanted to compete in the games but the timings didn't work as I'd already signed up for a bunch of other sporting things and didn't want to totally overdo it. Maybe next time...

Sorry for my absence everyone. The update the MN means I do t get notified any more when someone posts on this thread.

Hope everyone's kidneys are behaving as best way possible and hello to all the new people. Will have a good read back later.

My kidneys and BP are behaving as best as possible. Waiting for my next consultant appointment to discuss MRI results.

Glad everything is behaving AC, did you recover well from the Covid?

All ok here, still waiting on that kidney but coping well and enjoying life, can’t ask for anything more than that at the moment!