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!!

@OrganTransplant123 I feel the same as you, it is so frustrating how everyone thinks it is the end!! I am happy with the measures in place at the moment, still having a life but feel safe enough. It’s just going to go crazy now. I also feel like my transplant will signal the end of one problem but will just be the beginning of another - life with Covid around and no immune system. It all feels a bit hopeless really! I am dealing it by sticking to my theory that what is meant to be will be and I probably have no control over it. Pretty much like the poor person who ends up dying for me to get a kidney in the first place. We like to think we are in control but really, so much of it is out of our hands and what will be, will be. Not very helpful really but I don’t know an answer. I just wish people would realise that for so many of us, this is far from over. I am so envious of healthy people, they have no idea what they have!!

@queenofwobbles I actually felt better once I was under 15. It had been the number to dread and when I went through it and realised I was still me, psychologically I improved. Hope that makes sense!!

Also, the “work up” will probably involve a chest x Ray, heart ecg and heart scan and transplant bloods checking for antibodies etc! It was all quite painless! You can do it, we are here with you xx

@OrganTransplant123 nice to hear from you again, how are you feeling? :-) Are you back to working now? Hats off to you for being brave and facing your eGFR - I darent look online at the numbers though I know roughly where I am. Does that mean dialysis is maintiaining you at eGFR 10? Hope they can sort it out soon or at least explain the delay to you. I know no one likes a pushy patient (probably) but I am starting to feel like if we dont ask we wont get.

With this "back to normal" I think its all going to go crazy now. I want to stick with mask wearing (even though everyone will look at me and think I am an idiot). But if someone is going to cough over me surely it is better to be wearing a mask? I dont want to risk catching COVID and even if it is mild (due to the vaccines) there is still a risk to existing kidney function or risk from long COVID. Seems a bit of a lottery as to whether you get it bad or get it with no symptoms.

I really feel your frustration being immune supressed on top. It annoys me so much when people say the vulnerable are all double vaccinated so they will be ok. Or that the vulnerable are all elderly and infirm (so can shield away). Like @SandysMam says, for so many of us, this is far from over. But most people dont care about that.

I'll be keeping my mask on when out, immunosuppressed, and even though I've had both jabs and also covid, I don't want to risk getting it.

Thanks @SandysMam you are right. We have no control so have to live with that just as some poor person is walking around now who could end up in a situation where they could be an organ donor.

Apparently @queenofwobbles your eGFR isn’t effected by dialysis. The other things improve urea etc as far as I understand it. The work up is all fine, don’t fret.

Has anyone applied for other jobs on dialysis? Unfortunately I’m on a fixed term contract so need to start job hunting. I could declare it as a disability but that feels a bit odd.

If you are looking in big organisations like NHS or other public sector I would definitely declare it as a disability. It sounds awful but sometimes they need to employ a certain quota of disabled people so it might even work in your favour! Plus then you can relax knowing you don’t have to prove anything.

Hide anything is what I meant to say.

I work for the local authority, and although not disabled, I am classed as so for work purposes. Means I can have 20 days off sick if it relates to my condition and it doesn't count towards my regular sickness record, so can't get wrong for it.

Thanks @SandysMam and @AdditionalCharacter yes counted as disabled for work purposes sounds like the right thing. Do they ask for more details if you tick disabled? I don’t want them to wonder why I’ve ticked it although I suppose there are plenty of invisible disabilities. It’s a struggle to feel motivated to apply for stuff!! I need to give myself a kick.

I think a machine to keep you alive definitely entitles you to reasonable adjustments! We might as well get some benefits from this shitty disease so please don’t worry about ticking that box, I can’t imagine anyone who would argue with it.

I don’t know if they would ask for more details though but don’t be ashamed to tell them, you are bloody amazing!! We all are

@Organtransplant123 Do you mean the guaranteed interview tick box? I don't think they ask for the reason on the form, but dont know if HR follow it up before interview (please report back what happens !). Anything optional like collecting demographics for HR I'm a 'prefer not to say' person!

Beyond that, I might check out job flexibility with HR or breezily mention it in the interview (if they didn't), but I wouldn't have thought you need to get into the deeper details of it all till job offer stage / occupational health checks? Its not something I can drop into conversation easily so I feel your pain! Good luck on the job hunt!

Thanks! I’m concerned that if I don’t declare it upfront then they won’t be happy if I want to ask for any adjustments.

I wish I was the sort of person who could breezily mention it at interview @queenofwobbles !! I’m usually so nervous it’s hard to speak.

We are all bloody amazing! I need to remember that sometimes.

Maybe breezily is the wrong word! I'd actually be really reluctant to mention it in any detail in the interview (or raise it at all) because I'd worry it will ruin my chances and I don't think interview is the best place to discuss medical issues. There must be instructions on how to play this somewhere - citizens advice?!

I know what you mean about worrying they will be angry at you for not declaring upfront. I think legally you can get the job offer and take it from there? I wish I had more answers.

It would be much easier if we could all just win the lottery money doesn’t buy you happiness but my God it would make shit like this easier!!!

Hi all
Just popping in to say hi.
I'm still doing really well. All the blood tests show the new kidney is working super well and I'm feeling better than I have done in many years.

Had a massive emotional wobble this week for the first time in about 5 months. Had 7 medical appointments of various sorts in 1 week - mostly totally routine and uneventful and it was just bad timing that all my routine ones coincided with a bunch of extra ones to follow up some new symptoms. And I went into the hospital in person for the first time in 6 months. Although all the appointments had really positive outcomes it all just got on top of me. I was very teary for the first time in ages. So I cancelled all my work meetings and took the day off. Bit of fresh air, sunshine and cheesy music did wonders for my head.

Glad to see you're all doing ok.
I share your worries about the post lockdown world. Not looking forward to getting back to commuting by train if people don't wear masks. And pretty much resigned to the fact that my kids will get it at some point.

Ah hi @ShinyHatStand lovely to hear from you and so glad you are doing well! Totally understandable to have wobbles, you have been through a lot!! Also, the mental load of all the hospital appointments on top of normal life is massive.
I’m not sure where I read it but apparently there is good data about the vaccine working in immune suppressed patients so hopefully that will help opening up easier (along with better treatments etc). I am trying not to read any Covid threads on here, some of them are terrifying!
Thanks for checking in xx

I don’t want to be the voice of doom on the immunosuppression issue but the PHE data isn’t great. The numbers on immunosuppressants in the study were low and they didn’t differentiate between why people were immunosuppressed. The lowest level of antibodies after two doses was 20% and highest 95%. There’s clearly a difference and that may depend on why you are immunosuppressed in the first place and/or type of and dose of medication. Kidney Care Uk are urging caution.

Hi @ShinyHatStand I’m also resigned to my dcs getting it. I’m dreading it though!

Winning the lottery sounds good @SandysMam !!

Sorry to hear you've had a bad week @ShinyHatStand, all those appointments would have pushed me over the edge as well. As a matter of fact, when my tumours were first discovered, I had so many scans/MRI/specialist appointments and operations over two months, I developed a fear of going to any medical appointments including GP and dentists for a good 2 years and only recently have been able to go without having a minor freak out.

I'm not looking forward to the 19th, people are already breaking rules on masks and social distancing, it just doesn't feel a positive move.

@OrganTransplant123 I probably actually read that in the Daily Mail (aghhhh!!!) so your source is likely to be more accurate

Enjoy the football those who are watching!

Hi everyone! This thread has died a bit of a death but just wanted to come on and say hi and send love to you all. I am doing ok, still just about at pre-dialysis, but feeling quite peaceful that it will be coming soon but determined for the first time not to worry about it until that time. Literally stopping myself when I start to worry. Shouting at myself!! I am less depressed for sure and enjoying life a bit rather than constantly worrying.

Anyway, you might have all vanished and no obligation to post but thinking of you all

Glad you're feeling more positive about it Sandy.

I'm just plodding along, feel like I'm in limbo, waiting for my MRI in November/December to see if the operation and increase in chemo tablets has shrunk the blighters. Suffering with lots of mouth ulcers, so inevitably have lost some weight because I can't eat anything. It's a win win.

Oh mouth ulcers absolutely suck! Is it the chemo tablets that cause them or just generally being run down? I found I had terrible ulcers before my CKD was diagnosed and I sorted the associated anaemia out. If you can, try to just be ok for today and forget about November rather than feeling in limbo. Do something nice for yourself and live each day. Very cheesy but it is working for me as the limbo anxiety was absolutely killing me.

Yeah, just from the tablets.

We are away for the weekend, so trying to enjoy myself and not think of things.

Hi @Sandysmam glad to hear you are hanging on in there! I still cant decide on options - feeling forced into PD by the nurses but worried if its even possible to sleep through and can you hear the alarms through ear plugs? Not sure I can hack being attached to it 24-7 every night and through the catheter. I still look pregnant so another dress size wont help. @HairyPotter I still need to get onto you for that survival advice and also shed advice (Hope you are doing ok by the way)!

@Shinyhatstand great to hear your update. Agree there is not much we can do about COVID other than be careful and stockpile nice hand gel! Also dreading public transport. Is there any chance of WFH or flexible working as a reasonable adjustment under the equality act?

@Organtransplant123 how is the job hunt going?

YES to a lottery win btw, it would buy happiness here for sure (happiness is a spare room and some shed space!). Nicer problems to have and all that! Hope everyone is well and hanging on in there