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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!!

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OrganTransplant123 · 26/04/2022 14:19

Hello everyone,

Nice to see you all. We had a stay or move decision 3 years ago and decided to move. It worked out really well but I’m not sure I’d like to leave a lovely new kitchen @FuzzyPuffling

Glad to hear everyone is doing well. My kidney is absolutely fine but have now been diagnosed with diabetes. It’s a subset of type 1 - latent autoimmune. The diabetes nurse said it’s nothing to do with my kidney or transplant but it seems a strange coincidence. The kidney nurse thinks it must be related somehow - it is common to get steroid induced diabetes but I have the type 1 antibodies. I keep expecting someone to ring and say they’ve made an error!

Sherwil16 · 26/04/2022 15:17

I was also diagnosed with diabetes, steroid induced for me. This was a couple of months after my transplant in 2019. I was prescribed metformin for a few months, then taken off it, so assumed things were back to normal. However in January 2021, I seemed to be heading that way again, so I started a low carb diet to see if that would help. It did, but is pretty limiting, so I'm losing weight, which is not great for me. It's hard when you know it's caused by the medication, but you still have to change your diet. I don't want to be on the metformin regime, which in turn might lead to other medication. Transplant recipients already take a shedload. Anyway, I have a video consultation this afternoon, so will have a conversation about the things on my mind.Hope you get some support with your situation.

queenofwobbles · 26/04/2022 18:40

Hi @ShinyHatStand ! Glad to hear things are getting more normal for you.

@FuzzyPuffling your house and kitchen sound fab! The market is crazy at the moment - need to be on the market to view but then so few properties are coming on (or get snapped up) its hard to find an on-ward move. Maybe I can bagsy one of the houses behind you Grin! @AdditionalCharacter you can have the one next-door - hopefully nice kitchens in the new builds! Grin. Happy right move browsing!

Yikes at these stories of steroid induced diabetes - I had no idea! Transplant is meant to be the best option but it comes with a new level of stress! @OrganTransplant123 I am sorry to hear this, rubbish news on top of everything else you have been through. I hope they can stabilise it for you - you doing well otherwise?

I am still in the wake-up-each-day-and-think-s#!t stage. I think I will be here for a while!

FuzzyPuffling · 26/04/2022 18:57

Oh man, can you imagine a whole field of Kidney-Folk?! I'd love that. We could hire a mini bus for hospital visits.

I'm so sorry about the steroid induced diabetes. I didn't even know that was a thing. I'm glad to know that though - not that I've ever needed steroids for my auto immune stuff, but it's best to be forewarned.

OrganTransplant123 · 26/04/2022 21:05

Sorry to hear you are in a similar boat @Sherwil16 I must admit to feeling really pissed off about it all! I just got on the kidney disease diagnosis but this feels like a kick in the teeth! The diabetes nurse has already prescribed me insulin as mine isn’t steroid induced so diet won’t help. I’m seeing her tomorrow and the plan is the start the insulin asap.

I don’t want anyone to panic that transplant isn’t a good option. As I said, the diabetes nurse thinks it’s completely unrelated!

RedDiamond · 29/04/2022 08:58

I recently had full bloods done as I have been so thirsty lately along with huge fatigue and no strength in my body and breathlessness. I rang the surgery to ask for a GP to interpret my results and the receptionist said that there were no notes on them so everything is "normal". It is now 10 days later and I am feeling awful. I have rung today to be triaged so hopefully later this morning I will have a telephone conversation with a GP.

I have an eGFR of 65 ml/min
My creatinine is currently at 85umol/L

A few years ago one of the GP's was alarmed at my results and I had to spend 3 weeks turning off the air conditioning at work, windows wide open (as I work in an office with 10 computer servers so it gets very hot, hence the air con) and drinking gallons of water. Eventually my blood tests showed an improvement.

This time around, my results are worse than before so I find it very hard to understand why I am "normal".

But I understand my results are nowhere near as bad as a lot of you but would you very much mind "interpreting" my results for me please.

OrganTransplant123 · 29/04/2022 11:50

Hi @RedDiamond your egfr shows slight kidney impairment but it many people have a slight impairment that never gets any worse. Those results wouldn’t cause any symptoms.

If your results improved previously then it could be due to being dehydrated.

Did they check for diabetes? That can cause excessive thirst.

RedDiamond · 29/04/2022 12:23

@OrganTransplant123 I think you are absolutely right! The GP phoned and spend a good 10 minutes talking to me. He said my levels have always been slightly elevated but never to a level they would consider investigating. He wants me to monitor my blood pressure over the next 5 days, as I do take medication for that, to see if my blood pressure is staying really high and that might explain all the fatigue etc. He also said my blood sugar levels were fine too.

queenofwobbles · 29/04/2022 12:46

Good luck @RedDiamond. I also thought diabetes with those symptoms but am not an expert. At eGFR 65 I was still out having the time of my life - I am currently scraping the barrel and even now do not have many symptoms!

ShinyHatStand · 02/05/2022 16:18

Hello lovely people.
I've come along for a blatant boast 😁
I only went and did a bloody triathlon yesterday! 😮😮😮
Only the so-called "sprint" distance (400m swim, 22.5km bike, 5km run). But still!
Can't quite get my head around it tbh. This time 2 years ago I was a total wreck.

Hope the rest of you are all doing ok. X

FuzzyPuffling · 02/05/2022 16:39

Bogging hell Shiny. You are are officially amazing. A thousand times, well done!!

ShinyHatStand · 02/05/2022 21:54

Thanks @FuzzyPuffling
I keep wanting to say things like "it actually wasn't that hard". But then I realise that makes me sound like a total knob. In reality, I paced it pretty conservatively so never felt like I was in danger of not finishing. But the hill on the run was utterly miserable.

FuzzyPuffling · 02/05/2022 21:59

You could have stopped. But you didn't. That's a gold medal winning race to me!

OrganTransplant123 · 04/05/2022 10:17

Wow, well done @ShinyHatStand that’s amazing!

AdditionalCharacter · 04/05/2022 15:28

Wow @ShinyHatStand thats amazing! Well done you!

SandysMam · 04/05/2022 17:30

Hi everyone, sorry, got booted out and forgot my password then couldn’t be bothered to get a new one! Glad to hear you are all ok, so random about the diabetes @OrganTransplant123, hope you get it stabilised.
Well done on the triathlon @ShinyHatStand bloody amazing! I am still doing well on the dialysis but I do really miss swimming so sounds amazing you did that. Just don’t fancy it with the waterproof pouches they provide for the exit site so very much looking forward to it if ever I get my transplant.

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OrganTransplant123 · 09/05/2022 17:05

Hi @SandysMam glad to hear you are well! Have you tried putting on one of the waterproof patches to see what it’s like? I’ll never stop appreciating being able to have a proper shower post transplant. Showering with a neckline was v hard! I was given some waterproof patches to try but changing the dressing was such a faff that it put me off!

I’ve got an appointment with my consultant tomorrow so I can get his thoughts on the whole diabetes thing. Still hoping it might all be a mistake!!

SandysMam · 09/05/2022 21:42

Yes I use the pouches for showering but they are such a faff that I would never dream of doing it in a swimming pool! I hate showering now, it takes so bloody long to get all taped up! I am definitely looking forward to it post transplant. There is so much I won’t take for granted anymore!

Good luck with your appointment, will be thinking of you!

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ShinyHatStand · 10/05/2022 21:53

Thanks for all the lovely comments all. Much appreciated.
Full of non-covid cold atm. Had forgotten how annoying something as minor as a cold can be.
I want to hibernate.

SandysMam · 11/05/2022 20:48

Hope you are feeling better this evening @ShinyHatStand
How did your appointment go @OrganTransplant123?

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OrganTransplant123 · 11/05/2022 22:06

Thanks @SandysMam My consultant was v confused that the diabetes was type 1 and not steroid induced - he even went into the blood results screen again to check what tests they’d done! He’s going to consult with a different set of consultants and see me again soon.

I’m speaking to the diabetes nurse tomorrow, which I’m dreading in case she adds fast acting insulin alongside the long lasting one. It feels so daunting but so was home dialysis at one point. I just need to pull myself together and get on with it!

Hope your cold improves soon @ShinyHatStand

SandysMam · 12/05/2022 06:10

It makes you wonder if they have just missed it for years? If so did that contribute to your kidney failure? Is there negligence there? Might be worth looking into.
If you can cope with home HD you can cope with this, it will soon all become second nature.

OP posts:
FuzzyPuffling · 12/05/2022 07:43

Just sending a bit of love to the cold-filled and insulin-nervous amongst us. Hope all resolves very soon.

OrganTransplant123 · 12/05/2022 13:09

Thanks @FuzzyPuffling

I definitely haven’t always had it so no negligence @SandysMam I’ve had my Hba1c done in the past and it’s been steadily increasing but nothing out of range. They only tested for type 1 antibodies because I don’t fit the type 2 profile and they didn’t think my steroid dose was high enough to induce diabetes. There’s a chance that the issue with my liver and kidneys is also attacking my pancreas but where the antibodies fit in there, I don’t know! I don’t think my consultant does either!

SandysMam · 12/05/2022 13:31

You my dear sound like a medical marvel!! It’s good to keep your consultant on his toes!
Seriously though, hope it all gets sorted and you find a new way forward with it, always here if you need a moan, chronic health conditions are a burden healthy people just can’t understand x

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