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!!

[Redbrook]

Hi, I’m so pleased to find this thread ! I’ll tell you where we are :
My DH has had kidney failure for many years, and is now at the stage where dialysis is looking like a serious possibility. His eGFR in the last 12 months has fluctuated between 14 and 20 - it improves when he is off enalapril (not sure of the spelling, it’s a blood pressure drug). He had an 18 a couple of weeks ago, so his consultant suggested taking it again; cue reduction to 16. BUT - he is well, not tired, on a normal diet, we cycle about 15 miles a day and if the weather is good then we’ll do up to 25. Had it not been for covid we would have had a cycling holiday in France this summer, and covid permitting we’ll go skiing in the new year.
Im hoping to be a live donor, but I’m definitely not a match for him so we will need a matched pair (is that the right terminology). I had a gamma scan last week, and this week I’ve got the kidney function test, CT scan, urogram and chest x ray. So far I just know that I’ve got 2 kidneys so that at least is a good start ! I just hope that I’m well enough, I can’t really think what I’ll do if I’m not. There is no one else we’d be prepared to ask.
I can so much relate to the poster who said about the stress of living from blood test to blood test. DH’s next test is 8 weeks off, so I can relax for a bit. At the moment I can’t engage with the idea of dialysis at all but I know at some point I’m going to have to seriously think about it.

[SandysMam]

Hi @Redbrook, sorry to hear about your DH but hopefully you have found the thread supportive. Some of the posts have really helped me, even in terms of dialysis which I now feel I can face if I have to. I think I am like your husband, otherwise fit and healthy so it is a shock really to essentially be so unwell! With regards to not knowing what to do if you cannot be a living donor...most transplants are from deceased donors, even if you can’t do it your husband has a very good chance of getting one otherwise which again has a good chance of working.
Keep posting! I forget to check the thread sometimes but will come back to it when I remember.
Don’t forget, he still may have years before his function goes even lower.

[FuzzyPuffling]

Hello all,
It's good to find a thread about CKD. I am at stage 3 (so not near the dialysis conversation yet) but it is still a worry. I still worry about blood tests and the daily trying to look after my kidneys thing - lots of water, no NSAIDs....
I suspect mine may be connected to my lupus, but no one seems terribly interested in finding out why. It's along the lines of "well we could do a biopsy, but that has risks and it wouldn't change treatment options". And the nephrologist and rheumatologist obviously never talk to each other or share information. Rheumy told me to take daily aspirin (for APS another AI condition - they come in groups!) and looked a bit surprised when I said I couldn't because of my kidneys! So I feel very much in limbo and wish there was some joined up thinking.

[Redbrook]

@SandysMam - thanks for the reply. You’re right, he may have a good couple of years yet before he needs dialysis, I just need to hang on to that and not worry too much.

[SandysMam]

Hi @FuzzyPuffling (great username!!).
I totally agree re consultants not talking. They look at the bit they are treating and that’s it!! Well done for being on the ball enough though to question it, not easy enough to have the confidence to do. I don’t know loads about Lupus but know Selena Gomez has it which led to her kidney failure. I’m sure it’s a lot of smoke and mirrors but I love reading anything about her or to see her jigging around in a bikini. I will never jig around in a bikini or look like that even after a full head and body transplant but I find it massively inspiring that someone so public has been through what we are going through.
At stage 3, you may never progress to end stage and I hope you don’t but you still have the worry of wondering and waiting. For me, in a way that has been the hardest part of all, the mental torment of it. I honestly feel better now it’s all kicking off really, the waiting is over, and at the moment I am living to tell the tale! I just wish I had relaxed a bit more when my eGFR was in the glorious 30’s!! I lost my care free days the day I was diagnosed with kidney problems and it has robbed me of so much.
Please feel free to post any old rubbish on here but also have a good read back through the thread, there are some really inspiring stories that have kept me going.

[FuzzyPuffling]

Thanks for the lovely welcome SandysMam, it's very much appreciated.

I don't think anyone knows much about lupus. It's a bit of a collection of crappy stuff that affects everyone differently. Except one of the treatments for lupus joint paint is anti inflammatories, which I can't have! But yes, I really do wish various consultants would talk to each other. Can you imagine what a shit Christmas party they must all have..."Who are you again? Did I see you last year?"

But I'm currently fortunate in that my kidneys don't worry me too much, apart from the general.worry you describe so well. So of course, no one thinks it's real, which can be another source of difficulty.

Everything is Hobson's Choice!

[renallychallenged]

Hi everyone.

I just saw on another thread that those with stage 5 CKD are going to be upgraded to the Clinically Extremely Vulnerable list (when they finally update the guidance ). Not sure who here that affects but those close to dialysis probably.


www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/C0830-i-gp-update-update-clinically-extremely-vulnerable-2nov.pdf

[renallychallenged]

@Redbrook welcome. My DH has the kidney failure also, I'm just a support act. You've done well to get so many appointments through - no live donor testing happening here (Leeds). Fingers crossed you're suitable.

[SandysMam]

Hi @renallychallenged thanks for that, another thing to make me feel even more vulnerable and shit!! My eGFR is 16 but pretty much stage 5 so guessing that applies to me this f-ing pandemic!!! You couldn’t write it really. Well you could, in a horror film! I can shield all I like but my kids have to go to school so it almost seems pointless really, shutting the stable door after the horse has bolted. I hope we can all sit tight until this is under control. I kind of have to pretend it’s not happening really or else it will destroy me.

[SandysMam]

Sorry that sounded like I was shooting the messenger, I genuinely meant thanks for the info

[renallychallenged]

Ha no worries @SandysMam it true it is rubbish for so many people ☹️

[MissKittyFantastico84]

Hello all!

Shamelessly placemarking. Hello everyone! I have IGAN and an Egfr of around 19/20%.

I've met my people. xxxx

[OrganTransplant123]

Hi everyone,

Welcome to the new faces! Sorry to hear you’ve had a drop in your egfr @SandysMam

I’m rather concerned about the inclusion of stage 5 in the ECV group as I’m already in the group due to my liver transplant. My egfr was 19 again last time so I’m not there yet I suppose! My children are in school too so this new period of lockdown is non existent here.

I’m so pleased that the vaccine news is so promising. I would be such a relief! The interim list seems to have younger ECV people quite a long way down the list after general older people. I’m surprised by that as I would have thought the ECV were more at risk of complications than the average 70 year old.

[SandysMam]

Hi @MissKittyFantastico84 welcome to the group of ladies (or wives) in waiting! Might be a few men too, ahhh a minefield so maybe safer to say just people in waiting!! Ha ha that’s what I call myself after my diagnosis, a lady in waiting as always waiting for next blood result!

The thread has been so useful to me, feel less alone but also lots of positive parts that life can continue, maybe not as normal but what is normal now days anyway?

@OrganTransplant123 I think the trouble is with ECV now including stage 5 is that lots of very elderly people have stage 5 and combine that with Corona and of course things don’t end well. Age still seems to be the biggest risk factor, although I hope and pray to avoid it until the vaccine as would be so annoyed if I died unnecessarily! My consultant has said she is not massively worried about me catching it as I am young ish, and female, 2 factors which are protective. I do think it’s a lottery though but for me, I have to try to not think about it! I am doing everything I need to to avoid it but I cannot take my kids out of school. Their development and mental health would struggle too much and I don’t feel I can do that to them. It is bloody stressful though when I think about it, so I try not to think about it! Are your kids still at school?

[SandysMam]

Sorry just seen your kids are still in school!

[FuzzyPuffling]

I had Us and Es done yesterday. Shall we play "Guess the eGFR"?

[SandysMam]

Well hopefully above 20...anything over that magic number and you are off the hook for a bit I’ll say!! Hope it all went ok @FuzzyPuffling

[FuzzyPuffling]

It was done by a lovely HCA who lives in our village, She'll even do my bloods through the car window if I want (I'm shielding with DH - blood cancer). She asked how we were doing and when I said we'd both been plagued by anxiety she got us an appointment with the social prescriber. That's lovely service and it feels like she really cares. I might contact the practice manager to big her up.

Fingers crossed for a decent number and no protein!

[SandysMam]

Morning! I really think some key workers have just gone above and beyond during all of this. As shitty as being sick is, I don’t think I would ever have known or appreciated true kindness until I had CKD. Yours sounds lovely @FuzzyPuffling and it is so important to still get bloods done at the moment. As terrible as waiting is, at least it helps manage the symptoms to know we have this (my anaemia is so well controlled now days).
Sorry to hear about your DH too, what a shitty year. Definitely take full advantage of any anxiety help they offer. I really try to focus on today. Am I ok right now and treat yourself to little kindnesses along the way. Keep us posted but remember the numbers can go up and down and whatever happens, you will face it when you get there because you have to.

[FuzzyPuffling]

Aw.."sandysmam", you're proper nice, you are!

[OrganTransplant123]

I agree @SandysMam I know some people have really struggled to access appointments but my GP surgery, local hospital and transplant centre have all been fantastic.

Hope your numbers are good @FuzzyPuffling I’m having mine done today so fingers crossed! It’s lovely that your HCP was so attentive. It must be reassuring to know you have someone like that on your team.

[FuzzyPuffling]

Hmmmm, eGFR is down 6 points ( boo) and is now at it's lowest (but not shocking yet), but good news is that the protein detected last time has now gone.
Conclusion "Abnormal but expected".

Which means no one will do anything!

[SandysMam]

I think if you are above say 30, then a 6 point reduction can be simply a lab count variation or being a bit dehydrated. I wouldn’t be disheartened and good news about the protein. Try to relax now until the next bloods!

[FuzzyPuffling]

I did wonder if it was because this test was done at 9am... usually I get an afternoon appointment when I have drunk a lot more water. I shall try not to worry. Thank you sandysmam

[FuzzyPuffling]

On the good side again, potassium and sodium both in normal range.