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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:
ShinyHatStand · 20/10/2021 21:55

If your immune system is compromised then you may be entitled to a third dose as part of your primary set of vaccines to get you to the same level of protection as most people get from 2.

Then you'd still be entitled to the booster on top of that.

www.gov.uk/government/news/jcvi-issues-advice-on-third-dose-vaccination-for-severely-immunosuppressed

OrganTransplant123 · 21/10/2021 10:27

It is confusing. I haven’t done battle re the dose for household members yet. I went for the booster even though it should be a 3rd dose. My renal nurse said just take it and we’ll worry about the admin later. As long as you get a pfizer then the actual vaccine is the same.

Being made redundant soon which is depressing, especially as it’s going to be tough to find something to fit in around dialysis.

AdditionalCharacter · 21/10/2021 16:38

I'll ask my consultant next week. I've had Pfizer all three times.

AdditionalCharacter · 21/10/2021 16:47

Sorry about your bad news @OrganTransplant123. Fingers crossed you manage to find a job that can work alongside your dialysis

queenofwobbles · 03/11/2021 10:09

Hi @OrganTransplant123 just popping on to say sorry to hear this rubbish news I hope you find something flexible! How is the job hunt? Life is hard enough without juggling jobs with dialysis! Hope all is going well otherwise Flowers

AdditionalCharacter · 04/11/2021 17:09

A little bit of positive news for me.

Following my operation in May, an increase in my chemo meds and an MRI last week, and a visit to my nephrologist today, my biggest tumour looks like it is slowly dying off. Will need it confirmed by my surgeon but sounds very positive, especially since I can no longer have operations and solely relying on the meds.

Hope everyone else is having a positive month.

PineappleSun · 04/11/2021 17:43

Happy to find this thread is still active. I have just had two sets of bloods come back two weeks apart both giving a eGFR indicating stage 3a CKD. I'm terrified, catastrophising, scared of leaving my 6 week old baby too soon, scared my husband will leave me. I have another blood test in 6 weeks and don't think there's anything I can do but wait. How did you deal with your diagnosis at first, especially if it was a shock?

queenofwobbles · 05/11/2021 12:44

Hi @PineappleSun congratulations on your baby! Sorry to hear you are having kidney woes. But it sounds like its very early days and a lot of IFs at the moment that might come to nothing.

For me it helps to know there is treatment available (dialysis) and we can survive this. I check out 'queen of dialysis' on twitter (who runs marathons and other amazing stuff with no kidneys) and we have a few dialysis heroes on this thread who have helped to ground me! I also found out there is a single mum at my unit going it alone 💪 (so when I am catastrophising about husbands leaving etc I think about that!)

But you are miles away from all this and it might never happen! Good luck with the wait!

PineappleSun · 05/11/2021 15:28

@queenofwobbles thank you so much for your reply, I really appreciate it.
My husband seems to believe it's a post pregnancy aberration and the denial concerns me that he'll run a mile once faced with reality in 6 weeks time. My eGFR has dropped from ~80 to 48 post pregnancy and what seems like such a steep and fast decline makes me think I'll fly through the stages, I'm only 31 Sad

OrganTransplant123 · 08/11/2021 07:01

Try not to panic @PineappleSun I know that’s easier said than done. It might be just a one off. If it is the worst news then honestly it isn’t as bad as you’d think. There are lots of us here with various stages of kidney disease to offer help or advice. Will keep my fingers crossed for you. Enjoy the baby snuggles!

Hurray @AdditionalCharacter I’m so pleased for you. How’s the pain now?

AdditionalCharacter · 08/11/2021 12:44

Congratulations on the baby @PineappleSun

@OrganTransplant123 pain is marginally better. I actually had a full nights sleep a few weeks ago, was absolutely amazing!

queenofwobbles · 08/11/2021 13:44

Hi everyone!

@PineappleSun sorry to hear you had a big drop I know it can come as a massive shock. I am the worst for having a wobble so I wont tell you not to worry. It's not easy when all you can do is wait it out - but I agree with OrganTransplant123 try not to panic and fingers crossed this could be a one off CakeFlowers

@AdditionalCharacter well done on this latest news fingers crossed its going away! Sleep is everything!

PineappleSun · 08/11/2021 16:00

Thank you everyone for being so kind, you're wonderful people. Is a one off something that can happen? I thought you couldn't really come back to from a number, not by more than 1 or 2 anyway. Then again I don't want to give myself a load of false hope.

OrganTransplant123 · 24/11/2021 09:20

Hi everyone, all change here. I got the call last week and had my transplant. All is going well so far, I got home yesterday.

AdditionalCharacter · 24/11/2021 13:31

Oh wow @OrganTransplant123 that was quick. Hope you're feeling so much better now, happy recovery Flowers

queenofwobbles · 24/11/2021 15:29

Wow OrganTransplant123 that's amazing news and so amazingly quick!! I'm so pleased for you. I have so many questions but they can keep! At least now you dont have to find a job to work around dialysis schedule!! I was only popping onto the thread to moan about my clinic but your news has cheered me right up! Glad you are feeling ok - take it easy CakeFlowers

OrganTransplant123 · 24/11/2021 15:53

Thanks @AdditionalCharacter and @queenofwobbles I was expecting it to take much longer. I was first on the list in August but immediately suspended due to mrsa. Then when I had clear swabs DH got covid and I was suspended again! It was such a shock when I got the call but I suppose you are never really expecting it.

Do have a moan about your clinic appointment queenofwobbles and feel free to ask any questions!

ShinyHatStand · 24/11/2021 23:19

Amazing news @OrganTransplant123
Just what I needed to hear after a spectacularly shitty few weeks. Kidney still doing well over here but dealing with some other even more awful family stuff.

Are you getting out and about?
Hard this time of year, but my regular winter walks kept me sane in the early months post transplant last year. Find the sunshine whenever you can.

OrganTransplant123 · 25/11/2021 10:46

I’m sorry to hear that @ShinyHatStand I hope things improve for you soon.

I am planning to start walking at the weekend. I can’t walk anywhere from home that doesn’t have stiles so I need DH with me to make sure I can manage them ok.

Do you mind if I ask whether once the swelling went down whether your normal clothes still fitted Shiny? I’m wondering if having a kidney in my abdomen means I’ll need to go up a size especially in jeans.

queenofwobbles · 26/11/2021 10:43

@OrganTransplant123 What a turn around! I hope you have a speedy recovery. Do you feel like a new person?! Let us know how you get on with the walk. The clinic is doing my head in. It just feels so chaotic and I never know what is going on and I find it a very triggering place! Its tough dealing with life and then dealing with all this s#!t on top! Thankfully the only good thing is the work up has started and I FINALLY met the transplant nurse so at least things are moving. Sorry to hear you are having a rubbish time @ShinyHatStand hope things improve for you.

SandysMam · 28/11/2021 18:38

Hi everyone, sorry the thread dropped off my watch list!! Too much to go back on but sending you all love and…wow @OrganTransplant123 that is fabulous news!! I feel absolutely elated for you. Wishing you a speedy recovery!! So nice to know people are actually out there getting transplants! Really really thrilled for you xxx

I meanwhile started PD in the summer. I almost feel stupid for worrying so much and wasting so much of my (and your Grin) energy on worrying about it. It’s not only absolutely fine, but I feel SO much better, so much more energy, feel really well, and much much happier. It’s a bit of a pain to do but I am in a good routine now and I can actually do so much more because I feel so much better. Hopefully this will make any one pre-dialysis feel better about it all!

Hope you are keeping warm, sorry for neglecting the thread for so long, so glad you are all keeping it going!

OP posts:
SandysMam · 28/11/2021 18:45

@ShinyHatStand just saw you are having a shitty time, hope things calm down and get better, thinking of you xx

OP posts:
ShinyHatStand · 28/11/2021 19:57

Thanks all. Really appreciate the kind words.
Been kind of weird dealing with stressy family stuff that has nothing to do with my kidneys.

I'm still well. Not cycling quite so much now it's dark early. Taken up running to try and keep my fitness up. But I fecking hate running 😂

SandysMam · 28/11/2021 20:18

I know what you mean @ShinyHatStand, us kidney patients sometimes forget that the world doesn’t revolve around our awful offal!!
This too shall pass remember xx

OP posts:
OrganTransplant123 · 29/11/2021 11:23

Hello all,

Glad to hear that the work up has started @queenofwobbles I know what you mean about chaotic clinics. It’s hard enough without all the noise, heat and general busyness.

I’m so pleased the PD is going well @SandysMam I felt the same starting HD, I was so ill and tired that I felt much better once the dialysis had started.

I managed to walk 2.5k in the snow yesterday over stiles. It’s so slippery today as the snow froze last night so will be staying in today!

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