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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 · 07/03/2021 18:59

Ah I see. It makes me feel so sad as there must have been people dying needing a liver with no transplants Sad
I just hope to God that things start to calm down now, probably a nurses strike (quite rightly!) will be the next thing!!

OP posts:
ShinyHatStand · 07/03/2021 19:06

I was on the ward with a lovely lady who was waiting there for 7 months for a liver. She wasn't well enough to be discharged so was just waiting indefinitely with no visitors. It was heart breaking.

SandysMam · 07/03/2021 19:14

F&@king Covid Angry

OP posts:
AdditionalCharacter · 07/03/2021 19:45

My friends little girl was waiting for a transplant (heart and lung) when the first lockdown happened. Unfortunately she didn't make it. So so sad.

I really hope they are in a position to fully start transplants soon. So many lives lost not just for having covid but also because of the cease of urgent medical procedures.

SandysMam · 07/03/2021 19:50

Ah that’s so sad, I’m so sorry for your friend @AdditionalCharacter. Puts it into perspective really and certainly makes me realise I need to appreciate the health I DO have and the fact I have already made it to adulthood which isn’t a given.

OP posts:
ShinyHatStand · 07/03/2021 19:55

Ok guys. Let's stop this. Enough of the misery 😀

What good things have happened this weekend?
I ate a huge Nutella brownie. It was amazing 😁

SandysMam · 07/03/2021 20:15

Ha ha ok Shiny!! I had a lovely walk with a friend and a good old chin wag! It was fab! She told me I was a dickhead when I told her I thought everyone would be better off without me Grin

OP posts:
AdditionalCharacter · 07/03/2021 20:48

Sorry Shiny, as we were.

I went out today for the first time in weeks, did my mental health the world of good.

ShinyHatStand · 07/03/2021 21:19

Now you're both just trying to rub in that you've been out walking while I've been stuffing my face 🤣

AdditionalCharacter · 07/03/2021 21:25

I ate gelato when I was out, does that help? Grin

ShinyHatStand · 07/03/2021 21:30

Definitely

renallychallenged · 07/03/2021 21:32

Hello all, not posted on here for a while.

. @MissKittyFantastico84 @SandysMam
It's so stressful worrying about the future. I would actually says it can be more stressful worrying about the "what ifs" than when the reality eventually hits.

How old are your children? So they have any understanding of what's happening? I may have mentioned this before but there are some books on Amazon called P is for Peritoneal Dialysis and H is for haemodialysis which you may find helpful.

DH is almost 15 months into dialysis (automated peritoneal dialysis overnight at home) now. Soon it will be longer this time than it was before his transplant came along last time. I think that will be a difficult milestone.

It's been an odd year for obvious reasons. I'm just starting to think about holidays for this year. We like outdoorsy things like camping and yurts. Searching for something with electricity and hot running water is a bit of a challenge! I think last year we didn't really feel that restricted as obviously no one could go anywhere but this year I'm going to be very jealous of everyone else's nice trips.

SandysMam · 09/03/2021 07:28

Hi @renallychallenged lovely to hear from you! Hope your DH is doing ok and has had his jab now.
Your opening line about worry is exactly what I need to hear and little gems like that I keep, so thank you. Worry has stolen so much from me!!

I know exactly what you mean too about feeling left behind when the world is moving forward. Might it be worth contacting kidney care uk or someone like that and see if they have any special kidney holiday places? You never know? We looked at some UK breaks but they are so ridiculously expensive!! Holiday cottages etc have doubled in price!

OP posts:
FuzzyPuffling · 10/03/2021 07:38

Hello again all! You fell off my watch list ( feeble excuse) so I missed you. Also I had a lupus flare after my vaccination ( fairly common, apparently) but am ok again now.

My good news...I have lost 23lbs now ( woo hoo) and this week did an 8 mile walk. Only one blister!

Who knows what my kidneys think of all that.

Huge hugs to anyone feeling it at the moment.

HoneyBeeGood · 10/03/2021 09:05

Well done @FuzzyPuffling, do you have any recommendations for losing weight? I just seem to be comfort eating all the time! Goodness knows why, I think I seem to be quite happy most of the time but wondering if I'm quite anxious underneath? I cried when I had my vaccine which surprised me but I think I must have been more worried than I thought.

FuzzyPuffling · 10/03/2021 09:52

honeybeegood. I'm not following any recommended diet and I am also a comfort eater. I identified when I am most hungry ( evening) so load my food to the end of the day.
So, breakfast is 2 cups of coffee ( semi skimmed milk) but no food. Lunch is home made veg and lentil soup, followed by coffee and a home made shortbread biscuit. Just one!
Dinner is a proper meal with a lot of veg. I cook from scratch 99 % of the time. Small pudding and a piece of cheese and a handful of almonds.
I'm now losing just over a lb a week, which is fine. Another half stone to go!
Daily walk of around 2.5-3 miles ( with hills) gardening and keeping busy helps too.

HoneyBeeGood · 10/03/2021 10:15

Thanks @FuzzyPuffling, I'm off to walk the dog and try and walk off the buttered toast I had for breakfast Smile

FuzzyPuffling · 10/03/2021 10:59

Excellent honeybee. I can't move...I have a cat on my lap!

SandysMam · 10/03/2021 15:48

Hey fuzzy, that’s fantastic! Well done! Your kidneys will thank you for sure, probably via your blood pressure which will no doubt be improved!
There is just nothing to do but eat at the moment though!! I plan my life around eating!

OP posts:
FuzzyPuffling · 10/03/2021 16:16

Thank you sandysmam I plan my life around eating too...I just try not to actually DO too much of it.
This afternoon I'm doing some applique and embroidery, freehand stuff, just to keep hands and mind busy.

nailsathome · 12/03/2021 16:14

Hi everyone. Would you mind if I asked some questions? I've got a gp appointment on Tuesday to discuss some symptoms and blood test results but I've been silly and used Google so now I'm a bit worried. I have a degree in pharmacology and I'm a science teacher so I haven't just blindly jumped into thinking I have kidney issues but I'm leaning towards it looking that way.

My symptoms are tremors, dizziness and fainting, peeing through the night, fatigue and lower back pain. Bloods show high creatinine, low rbc, low haematocrit and low hawmoglobin with a gFR of 54. Looking at my historical tests, my gfr was 90 in 2014 and has gone down steadily every couple of years since then. All other bloods are normal.

Am I preparing to hear that it's CKD or am I being silly?

renallychallenged · 12/03/2021 16:55

@nailsathome sorry to hear you're worried. It does sound like there is a chronic kidney issue if the eGFR has dropped steadily over 6-7 ish years.

The good news is it may well be completely manageable with some medication / dietary changes. Better to know now than in another few years when the situation could be worse.

Make sure you ask the GP for a referral to renal team, they will be able to help much more

MissKittyFantastico84 · 12/03/2021 17:03

Hiya @nailsathome - sorry to hear that you are having a tough time.

The decline in eGfr does sounds as though you might have some kidney complications. However the tremors, dizziness, fatigue and other symptoms are most likely related to the issue that is causing the decline, rather than symptoms of your current kidney function - if you see what I mean. I currently have function of 15% and I get a little tired sometimes, for comparison.

So many conditions come back to the kidneys and it may well be treatable so I hope you get more information soon. This group will be here if you need support or some friendly people to chat to.

Wishing you all the best. I know how scary and all consuming it can be. xx

nailsathome · 12/03/2021 17:26

Thank you @MissKittyFantastico84 @renallychallenged

I've read through this thread and I know you're all in a much worse position than I am but you seem like such a lovely bunch, really kind and supportive.

Depending on what Tuesday brings I may be back. Thanks again for taking the time to reply.

FuzzyPuffling · 12/03/2021 17:58

nailsathome, I can't add anything on a practical level, but I hope your appointment goes well, and that your worries are firmly squashed.