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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 · 21/04/2021 12:31

Hi everyone, hope you’re all having a good week.

So quick question about post transplant immune suppressants. If they strip your immune system, how do you just not become overwhelmed by every day germs?
This is probably my biggest worry, I know you have to be careful with hygiene etc but wouldn’t even simple things like plaque bacteria in your mouth or everyday dirt just overwhelm you and kill you? Never mind things like colds and Covid!
It blows my mind really and is a big worry!

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OrganTransplant123 · 21/04/2021 12:39

They don’t strip your immune system, they suppress natural immunity. I’ve been on then for 17 years now and can’t say I’ve suffered from any particular problems, you just have to be sensible! They warn you about not having new tattoos/piercings, at one point they said IUDs were too risky infection wise but the advice has changed and I’ve had one for 3 years.

I’ve had two pregnancies, dealt with childhood illnesses, regularly clean out my chickens, garden, deal with the cats without becoming overwhelmed with germs! I really wouldn’t let it concern you. Wash your hands and don’t visit ill people!

ShinyHatStand · 21/04/2021 12:58

@SandysMam I agree with everything that OrganTransplant123 says.
The dosage is low compared to what, for example, chemo patients have. The aim is definitely to get back to something very close to normal life. But as OT says avoiding obviously ill people and other sensible easy precautions.
And for many common minor bugs my understanding is that the drugs make it more likely that you'll pick up whatever is going around but doesn't necessarily mean you'll be more ill than non-immunosuppressed people.

SandysMam · 21/04/2021 12:59

This is why I love this group! Thank you @OrganTransplant123, it has been really weighing on my mind how the hell it can work, particularly with kids and the filth they bring in! Thank you! Hope the home HD is going ok!

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MissKittyFantastico84 · 21/04/2021 12:59

Thank you @OrganTransplant123 - I hope that helps you @SandysMam

It is honestly so great to have you lovely people to ask these questions. Thank you for always popping back and helping us calm down a bit.

I was saying to my husband in the car the other day... "I really hope that someday soon I can be that person for someone in my shoes" Smile

xx

SandysMam · 21/04/2021 13:14

It’s so weird because even though I am pretty much end stage now, I actually feel in the best place mentally I have for a while. I’m sure this group has something to do with it!

OP posts:
SandysMam · 21/04/2021 13:15

Oh sorry @ShinyHatStand I didn’t see your reply as well, thanks to you too!

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OrganTransplant123 · 21/04/2021 13:38

Honestly @SandysMam as @ShinyHatStand says, the whole point is that you can live a full life. Even on leaving hospital they are really pragmatic about how things like your medication has to fit around your life. I remember the pharmacist going through all the drugs and saying ‘this one is before food, this one is an hour after food’ etc but then she said ‘but don’t let it rule your life, do what you can, take them all together if that’s easier for you’.

The home dialysis is going well. It’s a relief not to be travelling so much.

AdditionalCharacter · 21/04/2021 14:43

The tablets (low dose chemotherapy) I take to shrink my tumours (Everolimus) are also used in transplant patients. I had a good immune system before I started taking them, and other than mouth ulcers every few weeks, I've not really been I caught anything nasty. Even when I had covid it wasn't all doom and gloom. Been on them about a year and a half.

ShinyHatStand · 24/04/2021 18:31

How's everyone doing this weekend?
Hope you're all enjoying the sunshine ☀️

SandysMam · 25/04/2021 09:13

Hi Shiny! I’m ok thank you, having a nice weekend, love this time of year!
Feeling quite dizzy though, not sure if this is part of low kidney function? Might be the associated anaemia I guess but that is quite well managed now with Epo so not sure what it is. Going to try to take it easy and hopefully feel better for tomorrow.
Have you smashed any miles on the bike this weekend?

OP posts:
SandysMam · 25/04/2021 13:00

I meant to ask any transplant peeps...what would you recommend packing in your hospital bag?

OP posts:
ShinyHatStand · 25/04/2021 14:29

Good quality Bluetooth head phones you can fall asleep in and not lose in the bed. Like these
https://www.amazon.co.uk/Sennheiser-150BT-Wireless-Headphones-Necklet-Black

Super long charging cable for phone, tablet

Upload easy to follow audiobooks to phone/tablet. Familiar is good.
(Recommend the BorrowBox library app)
Upload music that's easy to fall asleep to but blocks out background noise

Squash, sweets

Slippers/flipflops you can wear to the bathroom. Plastic soles best.

I took a nightie but found it best to wear theirs so they washed them.

Comfy baggy dress for later stages of stay and to come home in.

Knickers (barely wore them tbh)

ShinyHatStand · 25/04/2021 14:32

Hairbrush
Shower gel
Small thing of shampoo. I was only able to wash mine a few days in but it was the best!
Sanpro (yes mine did arrive 1 day post surgery!!!!)

ShinyHatStand · 25/04/2021 14:34

Wipes
Moisturiser often on these lists but I didn't use mine.

MissKittyFantastico84 · 25/04/2021 16:23

Hey @SandysMam - just wanted to let you know that I am also experiencing some dizziness. It seems to be worse if I'm dehydrated or need to eat. My level are also all 'fine' so not sure what's going on. It does seem to come and go though. Not really sure where it falls in the list of symptoms to expect! xx

SandysMam · 25/04/2021 17:36

Thanks Shiny, that is massively helpful, keep the ideas coming (although I’m sure the more prepared I am, the longer I will have to wait for a kidney, like when you pop to the shop without brushing your hair and see EVERYONE you know, might be better to be unprepared Grin)

I am also wondering if the dizziness might be second jab related. I had it done about 2 weeks ago but it could be to do with that? Good reminder to eat and drink properly though just in case.

OP posts:
SandysMam · 25/04/2021 17:37

P.S I am loling at you barely wearing knickers Shiny, you floozy Grin

OP posts:
ShinyHatStand · 25/04/2021 17:52

When I came home I basically lived in 2 soft jersey dresses with no knickers for about a month until my wound was properly healed. Even when I went for a walk.
Fortunately there weren't any Marilyn moments 😂

Strange talking about it now. Feels like a lifetime ago.

Snoopdog83 · 26/04/2021 00:02

Hey everyone!
I’ve come to join in - my kidneys are rotten, last had bloods done before the first lockdown, 29% function which has been, for the most part, stable for 5 years, apart from the odd blip down to 23.
Got my first bloods in forever tomorrow and I am sh*tting myself, totally relate to everything you’ve all said on here so far.

MissKittyFantastico84 · 26/04/2021 09:05

Hi @Snoopdog83 - so sorry that you're going through this. We all understand and we're here for support if you need it. Wishing you the best xxx

OrganTransplant123 · 26/04/2021 12:04

The most important thing for any hospital stay for me is earplugs and an eye mask! I did use moisturiser and lots of lip balm. Slippers that you can get on without bending down. A dressing gown. Hair bobbles! I think I wore hospital gowns mainly and then v soft tracksuit bottoms for ages.

Welcome @Snoopdog83 hope the bloods are ok.

I’ve not experienced any dizziness. Are you keeping an eye on your blood pressure?

SandysMam · 26/04/2021 13:06

Thanks Organ, I have just ordered an eye mask off Amazon!
I did wonder about blood pressure, the trouble is I always get anxious before hand which makes it go higher so I never really know! But I will speak to my consultant I think.

Hi @Snoopdog83 welcome! I really feel for you on the rollercoaster of waiting for bloods, living blood test to blood test is so hard. It’s weird because now I am technically in stage 5 I don’t feel so obsessed with the numbers, it is much more about how I feel. I have been so helped by this group and I hope you take comfort in some of the info and stories too.

OP posts:
Snoopdog83 · 26/04/2021 13:13

@SandysMam

Thanks Organ, I have just ordered an eye mask off Amazon! I did wonder about blood pressure, the trouble is I always get anxious before hand which makes it go higher so I never really know! But I will speak to my consultant I think.

Hi @Snoopdog83 welcome! I really feel for you on the rollercoaster of waiting for bloods, living blood test to blood test is so hard. It’s weird because now I am technically in stage 5 I don’t feel so obsessed with the numbers, it is much more about how I feel. I have been so helped by this group and I hope you take comfort in some of the info and stories too.

YES! I have such bad anxiety anyway, the blood tests make me so anxious, when there’s not a lot I can do about them, but I feel like I’m constantly waiting for the next lot and not really living properly If you get me. My consultant said in December 19 he would imagine in around 5 years I will need something - my brother has said he will be a live donor which is amazing. Just wish I could shake the constant anxiety. Think loads of it stems from my first consultant when I was 20, who told me I would be on dialysis by the time I was 30 😳 just hit 38 on Friday, so he wasn’t right 😂 sitting outside the hospital now on my 50th bottle of water 😂
SandysMam · 26/04/2021 15:28

Ha ha I know all the blood tests hacks, loads of water, no meat the day before, try to get the latest slot in the afternoon so you have all day to hydrate! I honestly wish I hadn’t been so focused on the numbers over the years, I wasted time (and kidney function!) worrying! Hope the results are ok and you can breathe for another few months. Try to make sure you do breathe though, switch it off until the next one.

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