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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:
HoneyBeeGood · 21/02/2021 15:42

When I had my vaccine last week, I slept pretty much for 24 hours afterwards, completely wiped me out. I think it's a pretty common side effect? Did you guys have AZ or Pfizer?

FuzzyPuffling · 21/02/2021 15:56

I had AZ.

HoneyBeeGood · 21/02/2021 16:08

I had AZ as well, I wasn't bothered which one I had as long as I had it!

AdditionalCharacter · 21/02/2021 18:05

Pfizer.

SandysMam · 21/02/2021 19:21

I had the Pfizer and felt like I had Covid again for a day but only a day! Apparently it is worse if you have already had Covid.

OP posts:
FuzzyPuffling · 22/02/2021 08:11

I think I might feel human today! So just under 48 hrs from vaccination. ( My temperature went right up last night but is normal this morning). Definitely on the up and making antibodies as we speak!

SandysMam · 22/02/2021 09:49

Ah that’s so good Fuzzy, don’t rush anything though, good excuse to take it easy Grin

OP posts:
HoneyBeeGood · 22/02/2021 11:24

That's good @FuzzyPuffling , I'm glad you're feeling better. I went for another long walk today, it's lovely and sunny and I really enjoyed it.

FuzzyPuffling · 22/02/2021 11:55

I am a bit dizzy and spacey but winning. And yes to seeing the first sunny day for ages. The sheep and lambs in the fields near us have set up a choir!

OrganTransplant123 · 22/02/2021 15:14

That’s fantastic news @ShinyHatStand so glad you are feeling so well!

I had a moon face after my liver transplant, and I’m back on steroids now after they stopped my tacrolimus. I don’t think I have one now! Although DH wouldn’t notice and I don’t see anyone else!

Glad you are on the mend @FuzzyPuffling I had the pfizer and felt fine. Immunosuppressants can stop your body creating antibodies though. It’s good to have a reaction (although not at the time!).

All this exercise talk is inspiring. I’ve been going for short walks but tried cycling yesterday. I realised how much muscle I’ve lost with all the vomiting before starting dialysis. My legs were like jelly after 1km. I managed about 3 in all but I really do need to work on building myself back up.

ShinyHatStand · 22/02/2021 17:53

@OrganTransplant123 really well done for getting out. Hopefully you'll start to rebuild fitness so you're ready to properly enjoy the better weather whenever it arrives.
I've enjoyed exercise more than ever these past few months during recovery as it's so easy to see the improvement both in terms of the distance and speed I can manage. I track my activity obsessively using strava to make it easier to see the changes. The free version is pretty good but I've invested in the paid version - not like there is much else to spend money on these days 😂

ShinyHatStand · 22/02/2021 17:53

Btw @OrganTransplant123 why did they stop your tacrolimus? #nosey

SandysMam · 22/02/2021 18:00

Organ...that is amazing you went for a bike ride! You should be super proud of that, jelly legs or not, and again, very inspiring. I have been feeling so much brighter since we all starting chatting. I do not feel alone anymore (saying that makes me want to cry!!). My DH has noticed a difference in me too!
I went for a walk today (who didn’t!) and really got my heart pumping. I try to imagine the blood pumping through my body and the health benefits. The being fit to help recovery definitely resonates and is a really good goal to aim for. There is a website called Undefeatable for disabled people to keep fit and it really shows that if you can’t do much, doing something really makes a difference.

OP posts:
FuzzyPuffling · 22/02/2021 18:27

Organ that's really great!

Even I went for a walk today (a steady couple of miles) despite feeling vaccine-dizzy. Feeling a lot better this evening though.

And I tried on a summer dress that I really wanted to wear last year (but couldn't as it was too small). IT FITS!

We are all amazing.

HoneyBeeGood · 22/02/2021 19:44

Well done everyone on the exercise. @SandysMam I'm so glad you are feeling brighter. @FuzzyPuffling is right - we are all amazing!

SandysMam · 22/02/2021 20:00

We are amazing!! There is an unbelievable amount of moaning going on on mumsnet at the moment; this thread is like a breath of fresh air!! Although obviously moaning is totally allowed (mainly from me Grin).

OP posts:
FuzzyPuffling · 22/02/2021 20:06

Well i moaned about having jabflu, but i'm flipping delighted to be vaccinated. Hurrah hurrah hurrah!

(I reckon it's the monkey cold vector that set me off. Now if we have a pandemic of monkeycolds I'm all ready for it!)

ShinyHatStand · 22/02/2021 20:31

Great to see all the positivity on here.
I didn't feel so great today and had a bit of a wobble this morning. Every now and then I get really down about the fact that I'm always just one crappy blood test away from being ill again.

But I walked for half an hour before work and cycled for an hour at the end of the day. Broke my post transplant pb for cycling average speed.
I'm still on 50% hours as part of my phased return so have time to fit In exercise during the day.

SandysMam · 23/02/2021 09:44

Morning Shiny, hope you are feeling better today after your wobble. HoneyBee gave some good advice in her post on the 15/02 about accepting it is a chronic illness. We will never not be free of that worry and that is so sad. But maybe it also makes us appreciate things that those without that worry can’t.
It is definitely the thing I struggle with most for sure.

You should think about competing in the transplant games if ever they come back, or maybe doing something to raise some money for kidney care uk or someone like that. Might be a good focus for your exercise!

I have a gorgeous bunch of daffs on my window sill this morning, courtesy of...me!! Have made a vow to look after myself a bit better and try to be a bit more joyful, whatever is happening with my kidneys!

OP posts:
OrganTransplant123 · 23/02/2021 15:23

Well done everyone on their achievements, we should all be celebrating the small steps and moments of joy. So glad you are feeling brighter in yourself @SandysMam

@ShinyHatStand re the tacolimus. It’s a long story but the condition that caused my liver to fail may also be behind the decline of my kidneys but they aren’t 100% sure. Because tacrolimus can harm the kidneys, they decided to move me onto mmf and prednisone to see if it helped the function. It did nothing at all so I doubt the tacrolimus has anything to do with it.

Home schooling today had a lesson on organ function and organ donation. Finally a lesson I can help with!! Grin

SandysMam · 23/02/2021 16:56

Ha ha just get them to take a picture of you and hand it in!!

OP posts:
ShinyHatStand · 23/02/2021 17:21

Thanks guys. Much better day today. Nice couple of hours out in the sunshine after work this afternoon. And energy levels much better.
I get bloods done early next week - will be interested to see if my haemoglobin/rbc numbers are getting back to something resembling normal.

HoneyBeeGood · 24/02/2021 09:57

Hi all, I had a bit of a wobble yesterday, not really anything to do with the kidneys, more to do with the whole Covid situation. I'm in Scotland so we got our announcement re the roadmap out of lockdown and the government is being rightly cautious. But really for the first time I felt trapped. Which is daft really because I don't really go anywhere or do anything normally!!
So I allowed myself yesterday to feel rubbish and then gave myself a good talking to this morning. So onwards and upwards- I'm off to the delights of cleaning the bathroom!

ShinyHatStand · 24/02/2021 18:14

@HoneyBeeGood I love what you say about "allowing yourself to feel rubbish". Really strikes a chord with me. I'm still getting to grips with this. And it's super hard to explain to DH that some days are just shit and he has to let me have a moan without telling me it will all be ok.
As you say, you just have to ride it out. And not beat yourself up for not always been a happy bunny.
The tricky bit for me is to ride it out without totally derailing my diet 😂

HoneyBeeGood · 24/02/2021 19:35

@ShinyHatStand I have to admit the diet took a bit of a pounding yesterday! I blame DH coming back from the supermarket with doughnuts Grin
Allowing myself to feel rubbish or scared or upset is something that I have learnt to do over the years. It was a bit of advice that was given to me when DM died and I was grieving. I wasn't very good at it then and did a lot of suppressing which then came back to bite me on the bum. So when all the kidney stuff kicked off, again it was almost like a process of grieving, I think especially if you are diagnosed later in life and you haven't grown up with your condition. We grieve for the 'normal' life we were expecting and can never have again. After a while you do accept it but it takes time and you'll always have days that are rubbish, and if you allow yourself to feel the emotions that you are feeling it's easier then to accept and move on with life.
I found with DH that just talking to him about how I felt helped, his instinct was always to try and 'fix' problems - and try and find a solution. But after a while he understood that I didn't need anything fixed, I just wanted a rant or a cry. He has also understood that cake helps! CakeCakeCake

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