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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:
FuzzyPuffling · 20/02/2021 18:42

Hello all,
What a lovely thread this is. Full of kindness.
I'm a bit rubbish today as I've just had my covid vaccination, which is very good news but I am so tired.

But I had some grumpiness when I told someone I thought was a friend I was getting it and her response was "Why? You're not on any list".

The horridness of invisible illness (I also have lupus). Would she like to swap with me then?

Thank you for listening to my rant.

ShinyHatStand · 20/02/2021 18:50

Hi all
I've dipped in and out of this thread under various names.
Thought I'd come back to share some happy news.
I'm now 5ish months post transplant and doing really well. Some shitty side effects of the drugs, but physically fitter than I've been in very many years. Cycled 36 miles yesterday!
And most importantly I haven't randomly burst into tears for at least 2 months 😂

ShinyHatStand · 20/02/2021 18:52

And @OrganTransplant123 from what I saw on the ward and the tales my ward buddies have shared over the last few months, a kidney transplant is definitely hugely easier on the body than a liver transplant. I'm massively more well than the guys who had a liver transplant at the same time.

SandysMam · 20/02/2021 19:00

Hi Fuzzy...you got your jab!!! Yay!! That is fab news!! Please don’t let your good news be jarred by your friend. They are probably just scared and depressed, this shitty virus has turned good people (including me sometimes, see kidney arsehole reference above Grin) into people they really don’t want to be I’m sure. I hope you feel ok after a good sleep tonight! I felt rough for a day or two and my arm ached but it was better than having Covid! You deserve your jab so just be pleased and relieved.

Hi Shiny! That is fab news! I think about everyone who has posted on this thread and worry a bit about those who have disappeared so I am delighted to hear this!! The cycling is amazing! Keep us posted if you have any revelations about managing the side effects of the drugs, might be helpful if you figure stuff out as you go.
This has really made me smile, thanks for letting us know!! Smile

OP posts:
SandysMam · 20/02/2021 19:00

Sorry lots of use of the term “fab news” I need to expand my vocabulary!!

OP posts:
ShinyHatStand · 20/02/2021 19:06

Thanks @SandysMam most of the side effect seem to be easing with time. I guess our bodies just need to adjust. I've lost about 1/3 of my hair which is actually a good thing. I had far too much in the first place 😀.
And my periods were utterly horrific for a couple of months. But heading back to normal now.

For me exercise was key to recovery. I've not missed a day since 10 days post op. Started off walking then added cycling and yoga. Mentally it's given me something constructive to focus on on the shitty days.

SandysMam · 20/02/2021 19:14

Have you seen a yoga teacher on YouTube called Ciara Jean Roberts? I have mentioned her before. She has a fab Ted Talk, I think her channel name is wholly aligned but she has had transplants and dialysis and is really glamorous and bendy, very inspiring if you are looking for some yoga vids to watch.

I do worry about the hair loss and also the post transplant moon face but I also know it will be a small price to pay for being able to se my kids grow up.

OP posts:
FuzzyPuffling · 20/02/2021 19:38

36 miles of cycling is amazing. That would take me over a week. Seriously.

ShinyHatStand · 20/02/2021 20:33

The moon face wasn't an issue for me. I came off the steroids really quickly. Initially I started putting on crazy amounts of weight as my appetite went crazy and people kept sending me cake. 😀
But a combo of calorie counting and exercise sorted that out and I'm now well below my typical pre-transplant weight.

ShinyHatStand · 20/02/2021 20:34

Thanks for the yoga suggestion

ShinyHatStand · 20/02/2021 20:40

Thanks @FuzzyPuffling. I've been obsessively tracking my walking and cycling on strava. It great to see my stats gradually improving. Nice to have that reassurance that I really am getting better even on the days where I feel like I've taken a few steps backwards.

FuzzyPuffling · 20/02/2021 21:00

I'm really impressed. I've been dieting and exercising lots more in the past couple of months. I've lost 1.5 stone and feel loads fitter, but I do walking not cycling. ( Too many hills round here!)

ShinyHatStand · 20/02/2021 21:12

1.5 stone is loads! Really well done.

FuzzyPuffling · 20/02/2021 21:22

Thank you.

HoneyBeeGood · 21/02/2021 08:13

I put on a fair amount of weight with the steroids, but mainly because they make you really hungry and then being told that my diet wasn't restricted anymore so chocolate figured quite heavily for a while! But then I did the couch to 5K and calorific counted and lost the weight again. However it all went a bit pear shaped over Christmas and I haven't really bothered since then so I really need to get my act together. @ShinyHatStand @FuzzyPuffling you've inspired me, I'm going to go out today for a long walk.

ShinyHatStand · 21/02/2021 09:17

You go girl @HoneyBeeGood!

I find that having cheesy nostalgic music on my headphones helps me keep a smile on my face and a decent pace.

FuzzyPuffling · 21/02/2021 09:30

Well.done honeybee good. We all start somewhere. Be kind to yourself and just keep moving forwards. I've been losing a couple of pounds a week and it's working for me. Good luck!

On other matters I had my covid Vaccine yesterday and feel a bit rough today, but am still YAY at having had it. I can put up with a couple of days of this if it means I lose the fear!

ShinyHatStand · 21/02/2021 09:47

Great news on the vaccine @FuzzyPuffling.
I had the AZ one a few weeks ago and felt rough for about 12 hours starting about 12 after the jab. I found it reassuring that my shitty immune system had actually noticed that something has happened 😂

FuzzyPuffling · 21/02/2021 09:50

That's how I look at it tooshiny, but I also have lupus, so my immune system is utterly bonkers and goes into panic mode at the slightest thing! Probably what wrecked my kidneys too!
But hurrah, I'm sure I'll feel better soon and we're on the way out of this.

ShinyHatStand · 21/02/2021 09:54

I was really thick about my vaccination reaction. Couldn't figure out why I felt so fluey and was starting to panic that it was rejection related until DH reminded me that it was a classic reaction to the vaccine I'd had that morning.

FuzzyPuffling · 21/02/2021 10:30

I'm having a lovely morning in bed with coffee, a cat and The Archers! Temperature back to normal. I'm winning.

Shiny, that's quite funny really!

MissKittyFantastico84 · 21/02/2021 13:18

Hello returning thread friends! Glad to hear more positive transplant stories Smile

I've never been one for exercise- more of a sit-down-and-watch-murder-mysteries type. But I've found The Body Project on YouTube to be a great foray into it - short low impact workouts that I can do hidden away upstairs. I want to get into, well, not quite PEAK fitness, but in a better place generally. I do get quite tired at the moment (egfr 15) but I want to try!

And I second that this thread is lovely and full of kindness. Maybe having rubbish kidneys makes you a nice person. Let's go with that. There have to be some benefits- right!?! LOL. x

HoneyBeeGood · 21/02/2021 14:53

Well I'm back! A two hour walk so I'm feeling very virtuous, now just have to resist the temptation of a gallon of tea and a packet of chocolate biscuits!
The Body Project sounds good @MissKittyFantastico84 I might give that a try. I remember when my eGFR was 15ish I couldn't really do much exercise without it pushing my blood pressure up but it is a good idea to get as fit as possible before any sort of treatment because you do recover faster.
And I 'third' that this thread is lovely! It's so nice to be able to talk to people that understand, DH has been a brilliant support to me but obviously can't really feel what it's like.

FuzzyPuffling · 21/02/2021 15:07

Rubbish kidneys to are so invisible.
A two hour walk is amazing. High frequency be!
I've been on the sofa all day, can't stay awake. Post vaccine.

AdditionalCharacter · 21/02/2021 15:11

@FuzzyPuffling I was tired for a few days after my vaccine. My kidneys felt like they were going to explode the day after my vaccine, luckily went. Back to the normal pain Hmm after 24 hours. Hope you're feeling more energetic soon.

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