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Crappy kidneys thread 2

423 replies

SandysMam · 07/06/2022 20:37

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!

OP posts:
MissKittyFantastico84 · 16/06/2022 11:35

@Arsewangry My story is remarkably similar to yours! They picked up my wonky kidneys in the booking in pregnancy appointments and I was later diagnosed, four months post birth, with Iga Nephrology. I'm sure you also went through the emotional wringer - never mind having a blooming BABY, you've got crap kidneys too!!

Welcome to our lovely group - it really is the best place on MN. Come here whenever you have good news or worries to share - or questions about what the future may hold. We'll always do our best to help!!

I will say, when it came to people coming forward for me, I would have stolen an organ off any of them!! Maybe I have less scruples, maybe the survival instinct kicked in - but it could have come from anyone and I would have had it!!!! Just for balance.... 

@Redbrook Glad to hear things are moving ahead - you are a hero!! And you will be really well looked after - my brother was back on his feet after a day, and out in three. Sent off with some ibruprofen and back at work a few weeks later. And your partner??! It will be like the dust has cleared, a weight has lifted, and the summer sun will shine brighter for you both. Best of luck xxxxx

bookworm1982 · 16/06/2022 12:07

queenofwobbles · 12/06/2022 13:31

@bookworm1982 it’s not unusual for CKD patients to be chucked diazepam propanalol etc etc if you are stressed totally freaked out over dialysis decisions or so I heard! so I think you’ll be fine but obviously your GP should check and adjust the dose. Think the worry is mostly if you have very low function (probably not you) is that meds normally excreted by kidneys can accumulate. Or sometimes as you say NSAIDS can damage. I get your stress though - as SandysMam says almost all meds come with a CKD warning! Enjoy your holiday!

Thank you for this, and for everyone else who replied. I'm going to take one for my journey there and journey back. I literally never take meds these days so I think it'll be ok. Xxx

FuzzyPuffling · 16/06/2022 13:16

Oooh I love all you kidneyfolk. You're all so genuine and supportive, and not a viper in sight.

I am conducting a personal experiment. I am drinking a lot more water and keeping it up until my next kidney function test to see if it makes any difference. I am weeing a lot.

OrganTransplant123 · 16/06/2022 13:27

@Arsewangry and @MissKittyFantastico84 snap, mine started during pregnancy. They thought it was preeclampsia but it didn’t resolve after dd2 was born.

@Redbrook thanks for the update. Hope you feel ok about it all. The psychological aspects are harder than the physical stuff I imagine. The staff were absolutely amazing on my ward and I’m sure you’ll be treated like a VIP.

@FuzzyPuffling good luck with the experiment. Post transplant I had to drink 3500 litres a day for a few days. I spent almost all day weeing!

OrganTransplant123 · 16/06/2022 13:27

Not 3500 litres! 3500ml!!!

FuzzyPuffling · 16/06/2022 13:49

OrganTransplant123 · 16/06/2022 13:27

Not 3500 litres! 3500ml!!!

Not a whole swimming pool then? 😁

BeginningBridge · 16/06/2022 15:46

Can't believe I have only just found this thread and I will read through the previous thread over the next few days.

My efgr was 12 in April and I suspect is lower now. I feel very tired but often don't sleep well. I have a meeting at the hospital next week to assess my suitability for pd.

I had a stark warning of my limits a few weeks ago. I was at a wedding. As usual there was a lot of standing around after the ceremony while the wedding party had their photos taken. I started to feel tired and looked around but there were no chairs nearby so I continued to stand. I then felt a numbness in my legs so I decided to shift position in case I was standing awkwardly. At that point I collapsed but was still holding my glass ( of water!) upright!

I felt fine afterwards ( apart from the embarrassment) but it was definitely a reminder of my limitations. I'm going to my sons graduation in a few weeks so am a bit worried about lots of standing there too.

My BMI is too high for me to be considered for a transplant. So I have decided to have weight loss surgery. Most private hospitals won't operate on me because of my poor kidney function and the NHS waiting list is literally years long. I felt very stuck but have now found a private hospital in London which will operate on me so I am scheduled to have that surgery at the end of next month.

There is a risk that a general anaesthetic will adversely affect my kidneys and could push me into dialysis but I think I am so close to dialysis anyway it is a risk I need to take.

My poor kidney function was caused by hyperparathyroidism - the rogue parathyroid was removed 2 years ago but sadly the damage had already been done to my kidneys.

Luckily I am not working - I tend to get up late and then I manage reasonably well. When I meet friends they say how well I look but that is because I make sure I pace myself!

FuzzyPuffling · 16/06/2022 18:43

Hello BeginningBridge and welcome to the kidney threads. Yours sounds like a story and a half and I am sorry about your collapse at a wedding (Cue AIBU thread "Am I being bridezilla? Someone dared to collapse at my wedding and stole my thunder").

I also look very well apparently. Annoying, isn't it!?

AdditionalCharacter · 16/06/2022 21:19

3500l would certainly flush out your kidneys

Arsewangry · 17/06/2022 14:20

That's interesting that pregnancy is linked, I don't have any specific diagnosis other than "chronic kidney disease 3b". I have no idea what caused it or why I have it. I wondered if it might have been a kidney injury caused by hyperemesis gravidarum that I suffered from throughout both my pregnancies, and yes it was an emotional wringer having a new baby and told you have dodgy kidneys when you know nothing about it.

FuzzyPuffling · 17/06/2022 15:31

My stage 3 CKD is also a mystery to everyone. Actually it;s not, it could easily be linked to my lupus, but the rheumatologist doesn't want to take the risk of a kidney biopsy and isn't bothered about reasons, only symptoms. Which is annoying from my perspective.

MissKittyFantastico84 · 17/06/2022 15:34

I don't think pregnancy is linked as in it causes CKD @Arsewangry - just that anecdotally, I've heard of a lot of women discovering their CKD when falling preggo.

Probably coz we were otherwise perfectly healthy and just pootling along none the wiser!! I know I was... x

SandysMam · 17/06/2022 15:43

Hi to the newcomers on the thread! I know this group has been a huge support to me and made me feel so much less alone so hope it does that same for you!
@BeginningBridge i’m on PD so any questions just ask!

OP posts:
AdditionalCharacter · 19/06/2022 12:44

I've got covid 😩been feeling like crap all week.

does anyone know anything about the anti virals CEV people are meant to take? Did someone on the previous thread say not to take them?

OrganTransplant123 · 19/06/2022 15:46

Oh no, poor you @AdditionalCharacter My renal team said to contact them directly to organise anti-virals. My consultant was keen that I should have them. I’d speak to your team and see what their advice is.

AdditionalCharacter · 19/06/2022 16:03

Thanks @OrganTransplant123 , I'll email my consultants secretary.

SandysMam · 19/06/2022 16:11

Oh no @AdditionalCharacter I hope it clears up quickly for you. Sending get well wishes. I had a letter saying call 119 if you need the anti virals, might be worth a try?

OP posts:
queenofwobbles · 19/06/2022 17:52

Oh no the dreaded covid!!! How are you feeling with it? Another vote for contacting your team. Or 119. Good luck and let us know how you go on FlowersBrew

AdditionalCharacter · 20/06/2022 10:37

I'm feeling like crap, it's like having flu. Called 111 for anti virals, who referred to anti viral team at my local hospital. They've called me this morning, who can't help as they're unfamiliar with my condition or medication so have referred me to renal. Only have until tomorrow to start taking them, so feels like a waste of time. Have had symptoms since Tuesday, only tested positive yesterday 🤷🏻‍♀️

OrganTransplant123 · 20/06/2022 11:34

@AdditionalCharacter have you the number for your consultants secretary? I’d give them a call. My renal nurse said they were having problems with people referred through 111- people were waiting so long they missed the window. Better to try to get your consultant to know asap especially as you have a rare condition.

queenofwobbles · 20/06/2022 11:48

Its not very clear what to do. Some people get priority PCR kits where as others are told to do a lateral flow if symptomatic and contact the hospital. Others not told anything yet are eligible (Kidney Care UK has lots of info on this). Hope you get advice from the renal unit soon!

AdditionalCharacter · 20/06/2022 16:46

@OrganTransplant123 Ive emailed secretary yesterday, so hopefully they're on top of it. I'm feeling less crappy than I was last week, so hopefully I'll not need anti virals.

OrganTransplant123 · 21/06/2022 11:05

How are you today @AdditionalCharacter ?

SandysMam · 22/06/2022 21:11

Hope you are ok @AdditionalCharacter Xx

OP posts:
AdditionalCharacter · 22/06/2022 21:40

Doing much better today, thanks. Didn't get the antivirals in the end as symptoms are lessening daily, so missed the window.

Would not recommend this strain of covid, 0 stars.