Rubbish Kidneys Support Thread

[SandysMam]

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 ) 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!!

Sorry to hear you have been feeling unwell @nailsathome The eGFR drop is concerning but your other symptoms, apart from fatigue, don’t sound particularly kidney related. As my levels dropped I felt increasingly tired until I started losing my appetite and vomiting. I then started dialysis at eGFR 13.

That said kidney disease is a broad church, I’m sure on this thread we have multiple reasons for rubbish kidneys and not all symptoms will be the same so do come back and join us if you need to.

Thank you @FuzzyPuffling @OrganTransplant123 I've not had an appetite for a couple of months and I'm always saying I feel sick. Again just thought it was a phase or lockdown stress causing it.

Hi @nailsathome really sorry to hear you are having a hard time. Will echo other posters, you are unlikely to have any kidney related symptoms with an eGFR of 54, the body is pretty amazing and can cope with really low function well down to the teens and tens before symptoms start. That being said, it does sound like you may have CKD as your kidneys have declined, but LOADS of people live with early stage CKD their whole lives and it never really bothers them so please try not to panic, the chances are you will be fine and your kidneys will live as long as the rest of you. I hope you get some answers about feeling rubbish though, in my non medical opinion I honestly don’t think that would be kidney related at that stage. Always here if you need us. Also please don’t let my ranting on here add to your fear. Despite my kidneys I have a GREAT life! I just get my kidney shit out on here so I don’t have to in real life but even if you have CKD, there will be so much more to your life then just that, I promise

My mum had dodgy kidneys most of her life. They kept going with no outside help until she was 95, when she died of heart failure. I remind myself of this if I'm ever inclined to worry about mine!

Also, one of my cats likes to catch mice and eats them all bar the kidneys, which he kindly leaves for me. I think he reckons if he collects enough I can assemble them into a human organ! What a thoughtful kitty!

My cat does similar @FuzzyPuffling and leaves them in the kitchen where you’d least expect to find a mouse organ. Such a delight to stand on barefoot!

How did you get on @nailsathome I should have been clearer in my earlier post that the vomiting didn’t kick in until about eGFR 14 at 50 I didn’t have any symptoms.

I’m starting my home dialysis training next week. I can’t wait till I don’t have to travel to the hospital! Still nothing from the transplant centre. Does anyone know how long it took from their referral to being seen? My consultant wrote to them in December. I know covid will have delayed things but now I’m on dialysis I’d have thought they’d see me relatively urgently.

My cat brings in slices of bread . She sits next to them looking so proud of herself.

Having an awful week with kidney pain, can't sleep longer than 4 hours without having to sit up for a couple of hours for it to subside. Thank god I'm off work for the rest of the month. Have a phone consultation with my consultant next week, so we will see. Bloods tomorrow, hope it's not another infection, but I think it's more my tumours dragging on kidney tissue.

Hope everyone is managing well. The sunshine the last few days has been lovely.

Hi all. I'm doing ok. Currently trying, but failing, to drag myself off the sofa and out on my bike.

#VirtualKickRequired

More blood tests for me 😕

So no more info yet then @nailsathome.
When will you get the results? Fingers crossed.

The garden is beginning to come to life at last. Lots of Spring flowers out and the daffodils in the hedgerows round here are amazing.

Has anyone heard of or had hydronephrosis?

I've just been on a FB group for my condition, and someone mentioned it , and after googling, it sounds so much like what I've been experiencing. I'm giddy with hope that I might be into something and my consultant might listen when I speak to him next week.

New blood test done and the results are the same. Dr has apparently put no action needed on my file whereas he told me when I spoke to him last week that if it was the same it needed investigating no idea what's going on.

Oh no @nailsathome - I'm sorry that this is confusing for you. Is this doctor your GP or a renal consultant? From my completely non-medically trained point of view, an eGfr of 54 does need further investigation by a renal team under a hospital trust. Can you ask for a follow up appointment to discuss why no further action has been logged?

Hope you get more support soon. x

I very strongly agree with @MissKittyFantastico84

It's a gp, I'm speaking to a different one on Monday.

How are you all doing? We have an horrendous chest infection making its way through our household. I had so many plans for the garden this weekend!

I'm doing great tbh.
Spent most of today out on my bike ignoring my family and being generally antisocial 😀
Legs are nicely sore.

@ShinyHatStand that sounds like bliss. We're just having our bikes repaired/serviced and then we're going to find some nice routes to do. I need to invest in a better seat though I think.

Hi all,

@AdditionalCharacter I’ve not heard of that condition, sorry. Did you manage to speak to your consultant about it?

That’s odd @nailsathome I’d have expected you to be referred to see a consultant.

I bumped into my consultant in the corridor at the hospital this week. It turns out he hadn’t done to referral to the transplant unit as my BMI was too low. I wish he’d have told me that earlier! Anyway, my BMI is just back into normal now and I’ve been eating all weekend to bump it up a bit more.

@OrganTransplant123 no, speaking to him on Thursday.

It's basically when urine builds up in your kidneys because something is blocking it from exiting the urinary tract. Makes perfect sense since my tumours are twice the size of my kidneys, only happens when I lie down so they're probably getting compressed then. The pain is intolerable, I've been waking several times for the last month. I'm so tired I could and have been crying

That was thoughtless of your consultant, after you've been so anxious about it all.

@AdditionalCharacter that sounds rubbish. Is there anything which relieves it at all?

No not really. I bought a special pillow so I can at least try to sleep sitting up for a few hours before I can lie back down again, but it's not great long term. The only cure is getting rid of my tumours. They can't be removed, but the medication I'm taking is only keeping them from growing, I can't take the recommended shrinking dose due to covid.

So spoke to my consultant, poor bloke probably couldn't understand me through the tears.
It's not likely to hydronephrosis as my kidney function is ok. So going to get a contrast MRI and either embolising (cutting off the blood supply) the tumour, removing some of the tumour if it's possible or full kidney removal. I've already had two failed embolisations, so not looking great.

Sorry to hear that @AdditionalCharacter

I’m sorry you didn’t get better news @AdditionalCharacter I really hope they manage to take away your pain. It must be so debilitating.

I’m getting tissue typing blood done next week then I think the referral goes to the transplant unit. I’m finding putting on weight really difficult. I can only imagine that the dialysis is using lots of calories as I’m on 2000 calories a day.