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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:
renallychallenged · 01/09/2020 22:06

Brilliant update Sandy Daffodil

tobee · 02/09/2020 04:11

Lovely to see this thread pop up again. Hope everyone is doing well. Some great stories and advice on here.

Dh still seems to be doing ok on in centre haemo thankfully! He's been going out walking a lot since shielding has paused. It's his favourite exercise!

SandysMam · 02/09/2020 06:19

Hi @tobee glad your DH is doing ok. Walking is just fab, I always feel so much better after a walk!

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SandysMam · 09/09/2020 13:18

Hi everyone, not sure if you will read this! It may disappear again Blush
I am feeling so pissed off with people winging about Covid and then saying “at least I am healthy”. Well I’m not healthy, and still have to deal with it all!! What a wonderful year 2020 is Grin
Trying really hard to focus on today and blot out the other stuff (world ending, organ failure, nothing major lol!!). Kids are back at school now so am scared again of the virus but they have to be back, they can’t stay at home forever. Not sure what I wanted to achieve really, just a bit of a rant!
Hope you are all ok...I feel better now!!

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tobee · 10/09/2020 18:34

Any time you need a rant, rant away on here I say! That's why you started this thread!!

SandysMam · 11/09/2020 06:04

Grin thanks @tobee it is! A safe space to be an arsehole so I can pretend to be all serene in really life and coping with my illness with such bravery lol!!

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SandysMam · 11/09/2020 06:05

Start counselling with the renal unit next week, hopefully it will help! and save even your ears

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renallychallenged · 12/09/2020 22:02

That's great news on the counselling. I hope it helps.

Kids are back at school here too. And DH in work. Shielding is well and truly over! It feels weird - in some ways proper lockdown was easier as there was a strict protocol. Now there are decisions to be made all the time and it's so exhausting.

SandysMam · 17/09/2020 06:46

Yes it does feel like back to normal...apart from the doom and gloom about cases going up. My kids have to go to school and I have to kiss them and hug them.
There are no options on that so it just has to be a risk I have to accept and try not to think about. The counselling was really good, I felt a lot lighter afterwards. We worked on focusing on today and having worry time which has been helpful.
Hope everyone is ok xx

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Sherwil16 · 17/09/2020 08:33

I had a kidney transplant over a year ago. Prior to that, I did peritoneal dialysis at home for 6 months, then was offered a deceased donor kidney. I went on the transplant list when my kidney function was 15, and started dialysis when kidney function was 10. I didn’t have any symptoms even at my lowest kidney function, but felt exhausted and quite unwell for a few months after my transplant. I’m fine now and relieved not to have the physical limitations - food wise and machine setups - that accompany dialysis. Good luck with your experience

SandysMam · 17/09/2020 10:01

Ah thank you @Sherwil16 it is so unbelievably helpful to hear from people who have been through it all. Wish you all the best for the future!

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OrganTransplant123 · 18/10/2020 12:27

Hi all,

Can I join? So much of this tread rang a bell with me. My kidney nurse suggested asking friends for their kidney Confused I can’t imagine! I’ve only confided in one friend that my kidneys are on their way out.

I had a liver transplant 16 years ago and now my kidneys are giving up the ghost. My gfr was 17 so this triggered transplant/dialysis chatter. At my last review it went up to 19 which is good (obviously!) but I felt like I’d got myself mentally prepared for it getting worse and then it improved. It’s such a rollercoaster.

My liver failed in a catastrophic way so I didn’t have a period of ill health in the run up. I’ve been so well, apart from post transplant recovery, but I’m struggling so much with fatigue. I’m also struggling with low weight. I can’t seem to put any weight on even when I’m making a conscious effort to add in plenty of extra snacks and meals. It’s even harder when I am supposed to be avoiding high potassium foods. How do others manage?

renallychallenged · 18/10/2020 15:57

Welcome @OrganTransplant123. Can you speak to a dietician re foods? They should be able to advise and prescribe milkshake supplements if needed. It's important to keep your strength up.

How is everyone doing in the new covid restrictions?

SandysMam · 18/10/2020 17:03

Hi @OrganTransplant123 welcome! Sounds like you have really been through the mill health wise already! But you also know what to expect with a transplant so I wonder if that takes some of the fear away? Or maybe adds to it! I try to focus on today and not think too far ahead...I have counselling through the renal unit which has really helped. We work on staying positive but also on reality vs my fears. Can you see if your unit offers any? Counting down each blood test is really hard though, I just get them done and try to forget now.

Hi @renallychallenged how’s your DH doing? Hope you are ok too obviously!
I am still sick of Covid ha ha cannot believe I have wasted my last good kidney year on this bullshit Grin so many plans to do stuff which probably would never really have happened but sounds good lol

I am being careful but also have to accept my kids have to go to school and I have to hug them. If I catch it that way then it really is as unavoidable as being struck by lightening. It would harm them so much to be out of real life anymore than they were. I am really trying not to watch the news and even avoiding mumsnet a bit, it is all so scary really if bombarded with it.

Hope everyone is ok x

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OrganTransplant123 · 18/10/2020 19:50

Thanks for replying @renallychallenged and @SandysMam I tried the build up drinks post liver transplant and couldn’t keep them down. The consultant suggested McDonalds milkshakes as an alternative! I did speak to the dietician and she was lovely, it’s just hard to get enough’kidney friendly’ high calorie foods.

That’s good advice @SandysMam I’m doing the same re the children. They have to go to school and I can’t not hug them and be their mum.

I do have a question if anyone knows. I had my arm veins scanned and they concluded that I wasn’t going to be suitable for HD so my only option is PD. How low was anyone’s gfr when they had the tube fitted? The unit were a bit vague.

SandysMam · 18/10/2020 20:29

Oooh I have no idea! Didn’t even know that was a possibility! Egfr is 19 so not started all that yet, gonna be worrying about my veins now! Can you not have a neck line for HD? I have a meeting with the dialysis nurse soon, something to look forward to Confused

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SandysMam · 18/10/2020 20:47

Just looked into this, I have never been told to protect my veins and have blood drawn from my hands! Feel so angry!! I hope my veins are ok! Can I ask why yours are unsuitable @OrganTransplant123? Is it repeated blood tests?

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tobee · 18/10/2020 21:21

My Dh currently has a neck line for his haemo. But I think it's time limited? But I seem to remember that things have changed just in the 8 years since he first was on haemo. His current one has been in since about Jan/Feb this year. Not sure how long it could last though. Covid means he's not had much update from doctors; just sees the dialysis nurses x 3 a week.

tobee · 18/10/2020 21:22

To clarify, when I say things have changed, I think neck lines lasted less time 8 years ago.

AdditionalCharacter · 18/10/2020 21:32

Sitting in A&E and this thread popped up, it went quiet when it was last on my threads I'm on. What a coincidence.

I have a nasty kidney infection hurrah! Could have been picked up earlier in the week but my GP surgery aren't seeing patients so was fobbed off.

OrganTransplant123 · 18/10/2020 21:44

@SandysMam Don’t panic! Nothing to do with blood tests as far as I know- I’ll probably get this all wrong but it is to do with the size and shape of your veins and arteries. Mine are narrow and an unusual arrangement. The neck one is an emergency solution only according to the guy who did the vein mapping. I asked why they were unsuitable and he just said some people have weird veins!

Hope you feel better soon @AdditionalCharacter Complain to the surgery when you feel better. They need to listen to you.

AdditionalCharacter · 18/10/2020 23:10

Thank you @OrganTransplant123, might complain if it takes forever to shift.

Apparently it should hurt when I pee, but nope, everything feels fine. Always does when I have an infection.

@SandysMam, my veins are awful, my hands are my regular to go spots.

SandysMam · 19/10/2020 06:15

Ah thanks guys, sorry I had a paddy then fell asleep Grin so dramatic!

@AdditionalCharacter hope you got seen and got to bed eventually Flowers
The constant news that no one is being seen is really getting me down too, as if having kidney failure wasn’t shit enough there is now that uncertainty I might not get the care I need, although my renal counseller has said that is not the case.

Nice to hear from you all, stay safe!

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SandysMam · 30/10/2020 20:54

Hi everyone, hope you are all ok? Haven’t heard from @HairyPotter for a while? Know you were in kidney limbo a few months ago, how are things going now? Hopefully ok.

I had a meeting with the dialysis nurse this week, she was really nice and actually made me think I might be able to do this. We think CAPD might be best for me, probably a couple of exchanges a day. Has anyone done this rather than overnight? I do worry about a big tummy and everyone congratulating me on my “pregnancy” I would probably not know what to say and just go along with it Grin
I am pretty scared as it is definitely approaching, eGFR 16 now, falling quite fast. I still feel ok though, although worse than I have done and I could sleep and sleep and sleep. Trying to find the joy in life still though and hope for a brighter day.

Hope you’re all staying safe and well in these crazy times xx

OP posts:
SandysMam · 31/10/2020 08:12

Just a little bump for the Saturday morning browsers!!xx

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