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!

Oh I am pleased, was worried about you! Just rest up and just think, once you are feeling better that’s hopefully you done for a bit, another dose of antibodies to keep you protected for a while.

Glad to hear you're perking up a bit Additional character. Sounds like a bad do.

Thank you @SandysMam . All ok at the hospital this week - I am thinking of doing APD rather than CPD because I have some flexibility during the day and don't want to upset my sleep anymore than it is already! But I may change my mind. Which do you do?

I also have weight loss surgery planned at the end of next month so that I can lose weight for a transplant. I am not looking forward to the surgery (and the consequences) but it a means to an end....

Hi lovely people.
Sorry for abandoning you all. I go though phases of being able tonmostly forget my kidney woes and during those times I step away from the thread and crack on with being well.
All is still fab in my Shiny world. Happy healthy and eternally grateful.
Slightly stressed as DH has covid. He's banished to the spare room for the foreseeable.

Hope you're all doing ok. X

Hope you're fully recovered soon @AdditionalCharacter

Good luck with your surgery @BeginningBridge
Weight loss with kidney disease really sucks. For me the added irony was once I'd had my transplant I was able to lose a shed load of weight because I wasn't permanently knackered so could get back into regular exercise. And felt generally happier so didn't comfort eat healthy so much.
Really hope the surgery does the trick for you.

Thank you @ShinyHatStand . I feel I have to try the surgical route because trying to lose weight the usual way (eat less move more) just doesn't seem to work for me.

I did get a bit stuck because the surgeon I initially approached said I was too high a risk as a patient for a private hospital and put me on his nhs list (waiting list literally years). I have found another surgeon who is prepared to operate on me in London so I have decided to go for it!

I do feel very tired now and doing lots of exercise just isn't possible.

How long did you have to wait for a transplant?

Please may I join the group? I have stage 3b aged 69. My consultant said it was due to high blood pressure (now controlled).
I'm sorry you're going through Covid, AdditionalCharacter and hope you feel better soon.

Hello snuffy28 and welcome.
I'm also at stage 3. The high blood pressure bit is a bit chicken and egg (imo)...do you have kidney issues because of HBP, or HBP because of kidney issues? Who knows?

A friend popped round the other day to share her woes over her ill sister. At one point she said "... and her kidneys are shot to pieces. She's at stage3". She was very surprised when I said "yep, that's where mine are". If it doesn't show, it doesn't count!!! Grrrr....

Hi @BeginningBridge
I was lucky - my wait wasn't long as I had a living donor. Short covid related delay of a few months, but otherwise super quick. I never went on dialysis.

Hi @ShinyHatStand - glad to hear you're still doing well! I understand the needing space from kidney stuff - when I got down to 14% I just needed to reserve all brain power for what lay ahead.

I love that we're all here for each other though - through the ups and downs. I hope you all have a sun shiny week! Just be grateful that you're not currently trying to put down a tent and leave Glastonbury with the biggest hangover of your life... xxx

Not that that's what I'm doing LOL! I just spent the whole week being jealous of my mates that are there - but when Monday comes around, I feel SMUG as a smuggler.

Not Glasto , but we have a great festival venue near us ( in the middle of nowhere). We went to see Pete Tong this month, and later this week we're off to see McFly! 😁
And the best thing, back to a comfy bed, no camping required!

Hi everyone and hello to all the new people!

Hope you are doing ok @FuzzyPuffling I know what you mean. My CKD caused me zero symptoms (but so much mental trauma - you find out who your friends are when you are living life with a bomb shell hanging over your head!). Do you know if yours is likely to progress?

@BeginningBridge I am planning for PD overnight on the machine just because I dont know how I'd fit in 4 x manual exchanges in the day. Light sleeper so dreading the machine but lets face it there are not many options and I keep telling myself its amazing what you will get used to! Good luck with the surgery!

Queen of wobbles It is progressing. I'm trying to make it do so as slowly as possible!

Just found this thread and thought I'd join you all.
I've not long been diagnosed with CKD, and I haven't got much of a clue what's going on tbh.
I discovered I had high blood pressure about September last year (230/110 ish) - it had probably been that way for some time.
Anyway, GP decided to do bloods and found my creatinine was up.
BP is now fairly well controlled, but creatinine continues to creep up. Currently 165.
Got blood and protein in urine, oedema in legs, feet, abdomen (resolving since starting furosemide) Had an ultrasound (nothing to see) and a biopsy about 3 weeks ago. Not heard anything from that. Next appointment with nephrologist isn't until August.
Dr Google tells me I have an eGFR of about 30 based on current results, so not great.
Just wondering how worried I should be really - although reading through some of this thread, my results seem pretty good.

@FuzzyPuffling wishing you all the best for a sloooooooooow (or preferably no) decline. Its so hard battling something that's invisible especially when people seem oblivious to it

Hi @welshmum3 I didn't want to ignore you but don't have much good advice I am afraid - hopefully someone will be along soon with words of wisdom! It sounds like you are also going through the mill but try not to worry till you find out what you are dealing with. According to Dr Google I would be about to drop dead so I try to ignore him nowadays!

Hi @welshmum3 - welcome to our thread!

It's great that nothing came up on your ultrasound and that you've already had a biopsy. That's really the only way they can diagnose a lot of renal issues. That's how my autoimmune disorder was picked up. I had to wait about two months for the results so sounds about right that your next appointment is in August.

I wish you all the best with what comes next - I was diagnosed at Stage 3B at age 33. I'm now 37 and fast approaching my five months post transplant anniversary - and life is great!

Once you know more, you'll be on the right path - as kidney patients, we are lucky (even tho is doesn't always feel like it). There are things they can do - there are options. There are better things, but there are far worse things too.

And we're always here for support! Just ping us a post xx

Thank you :)

@BeginningBridge I do CAPD, 4 x exchanges a day. So one at 7am, one at 11am, one at 3pm and one at 7pm. It seems like a lot but it only takes 20 minutes and I actually quite enjoy the sit down! I kind of make it a bit of “me” time, usually save stuff to watch so it’s a treat. I do it at work who are legally obliged to provide a space for it, and also enjoy the break there! Obviously it is a pain and difficult if you are very adventurous (I’m not!) but for me (for now) it’s liveable. Might be different if it was going to be forever but I just tell myself it’s only a stop gap hopefully. I might switch to the machine at night soon just to try it but I do worry I won’t be able to sleep!
I also have the afternoon off sometimes if I am going somewhere so there is a bit of flexibility. Ultimately though, I WANT to do it because I want to keep feeling and looking well so I try not to miss it. Good luck for your surgery, one day this will be behind you and hopefully you can move forwards, slim and with a new kidney! Lots to look forward to!

Hi @Snuffy28 , hopefully they have got your blood pressure under control now and your kidneys will last you the rest of your life! Worth really looking into how to prevent further damage and remember never take ibuprofen!

Sounds like @welshmum3 , @MissKittyFantastico84 and me (bad grammar, sorry!) have had a similar journey. But not all kidney disease progresses to end stage so hopefully if you control your blood pressure Welshmum it will just plod along. The not knowing is the worst bit though, it was mentally torturous for me but now I am here and living (very well) to tell the tale, hopefully that offers some comfort that whatever happens, you will cope.

Lovely as always to hear from the transplant crew! Really does make me feel hopeful!

Hope your DH is ok @ShinyHatStand, our DD had it and we never caught it, even without distancing so it is possible but hopefully your renal team will be on it with the anti virals if you need any.

Thank you @SandysMam. I have recently retired so have flexibility during the day ( and I sleep badly now so not sure I can cope with alarms going off on the machine too!).

Good to read that you are managing ok. And yes, it is my image of the future ( post transplant) that is keeping me going at the moment!

You might even find things to be much better just with the weight loss and the dialysis. Honestly, I feel so much better than I did in late stage CKD. The dialysis (and the tube!) is a pain but the bits in between are better because I feel better.

Hi everyone, I hope you are all doing as well as can be. Sorry I haven't posted lately, I've been caring for my fiancé a lot and work has been so busy lately. How is everyone?

My poor fiancé is currently sat at eGFR 12 and had a rubbish time of it lately with pain and sickness. His pain turned so severe over the weekend he ended up being admitted to hospital Monday morning and is still in now. His pain is so bad the Fentanyl being prescribed isn't ridding him of the pain/pressure he feels in his stomach (he said he feels like he's going to burst), we're also waiting on results of an ultrasound done tonight too. To top it off the person next door to him is covid positive so we're praying he doesn't catch it. Need some positive vibes sent our way 😢. Trying not to worry but easier said than done!

I hope things are better for all you kidney warriors out there and the carers/close families of those too.