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!!

I’m less of a medical marvel and more of a medical disaster area! Thanks @SandysMam that’s very kind. I’ve not told anyone in real life about the diabetes yet. I can’t even articulate why really.

I am the same with the dialysis, hardly anyone knows! I do find it makes me appear a bit secretive though, I often have to say no to stuff if it times badly and I find I keep my distance from people as I just don’t want to have to be in the position to share. I can’t bear the head tilt of sympathy and when people say “my problems are nothing compared to yours” like I am so bloody tragic and something to make them feel better about their own lives! So I just keep it to myself mostly!

I was the same about sharing my woes with others. I found it particularly hard when there was so much uncertainty about my future. So basically I told pretty much nobody until after my transplant, which was super weird for them as it came complete out of the blue from their POV.
I hated the head-tilt "so how ARE you" from the few people that I did tell so I just stopped talking. It was enough to deal with my own stress without feeling like I had to help others with theirs.

Now I tell anyone who will listen 😂

I would be the same after a transplant! Will shout it from the rooftops!
It’s weird how that is something to be proud of but dialysis is (for me) something to be hidden. I guess in the Instagram perfect society we live in, plugging yourself in a few times a day doesn’t really fit! Even the word kidney failure makes you feel like a loser!
I am proud of myself though, I have done so much better with it all then I ever imagined.

Just realised this thread has over 900 posts! Will I need to start a new one soon do you reckon?

I know what you mean @SandysMam I didn’t tell ‘new’ friends or colleagues about my liver transplant. I was only in my early 20s and wanted to be ‘normal’, I suppose. Somehow not talking about something makes it less real.

I did tell friends about my dialysis because it was impossible to hide how utterly dreadful I looked, I lost so much weight it was obvious something was wrong! Lots of people know about my kidney transplant because I now live in a village where people know everything, probably even what I had for breakfast this morning!

Yes, do start a new thread soon, I don’t want everyone to disappear.

Hello, I know this thread is old but hoping someone might see this post. I've just had blood tests done to rule out causes of CKD (my egft is 76 and dropping, I am 40 years old with no other symptoms except microscopic blood in urine that I've had for years, and also protein). So I got sent for ANA and ANCA blood tests which doctor thought would probably be negative but wanted to rule them out, but this has come back:

Tests:
Antinuclear Antibody (HEP2)
Anti-neutrophil cytoplasmic antibody screen

Result:
Borderline
What you need to do: Speak to doctor

Antinuclear Antibody (HEP2)
Negative
(<1:80)
Do not use the ANA Hep2 test alone to rule out autoimmune connective tissue disease.

Anti-neutrophil cytoplasmic antibody screen
Potetntially abnormal
Negative
(<1:20)
(A negative ANCA makes the diagnosis of active granulomatosis with polyangiitis (formerly known and Wegeners) or active microscopic polyangiitis unlikely, unless there is strong histological, radiological or clinical evidence to support diagnosis.

I really don;'t understand what it means but I am very worried - do I have it or not?? I can't get hold of doctor to discuss and I just wanted to talk to someone. Don't want to spend weekend in an anxious state. Thank you xxxx

Sorry bookworm I have absolutely no idea.
All I will say is this. Anxiety has been far and away the worst bit of kidney failure, worrying what will happen.
You are a million billion miles away from kidney failure with your eGFR. You are 40 and unlikely to ever have kidney failure (even if your eGFR drops a bit more, I was honestly fine until I got to under 15).
In the rare event your kidneys do fail, you will also be fine, I am on dialysis and whilst it has it’s challenges for sure, I am happy and enjoying life. So try not to panic, don’t let fear rob you of today.

Hello bookworm ( me too, love a book!). I don't know what your blood screens are showing, but I have lupus and an ANA of 1:640 and stage 3 CKD, which may, or may not be related! ( I asked my rheumatologist why no one seemed interested in joining up the dots, and she seemed to think all the dots ( and there are more) are unrelated. It's hard as hell to get any kind of definitive answer from rheumies!
But...
My eGFR goes up and down a bit, but is basically reasonably stable. It's probably dropped 10 points or so in the past 8 years, so nothing at speed. I get it monitored twice yearly and drink lots of water. I'd describe my state as "anxiety but not panic", and I'm an anxious sort of person.

We're not an old thread... we're just a little less populated than some! Hang on in there!

Hi all
sorry not posted for ages. Glad to see you’re all plodding along. @SandysMam you sounds so much more upbeat than before the dialysis started. I’m glad it’s bearable for you and hope it’s a short stint.

My DH is fine, pretty stable on peritoneal dialysis. He has an infection in catheter exit site at the moment but got antibiotics which will hopefully see it off. Do not want it turning into peritonitis!

we were lucky enough to take the PD machine abroad for the first time a couple of months ago. We actually went skiing which was pretty ambitious but very successful. He did more skiing than he expected to be able to plus plenty of resting and early nights. I had a great time and I think it was good for the children to be see him doing something “normal”. They’ve forgotten he was ever not on dialysis now which is sad. Me lugging all the suitcases and gear through the airports was a sight to behold!

I have been approved as a live donor but not a direct match. I’ve been in the shared pool scheme twice but no match sadly. Nothing else happening on the transplant front.

Ah hi renally! Great to hear from you, I am much more upbeat thanks, as hard as dialysis is (and sometimes it is hard, but most of the time it’s just a pain in the ass!), my lowest point so far has absolutely been the build up to it, and entering the unknown. I look back now on how desperate I was around the time I started this thread and wish I could go back and give myself a big hug. I’m glad I documented it as shows how far I have come.

Skiing sounds amazing! You are fabulous cracking on and going. Had I heard that pre-dialysis I would never have believed it could be possible but now I am there, I can see that it could be (although still brave!!).
I also see now the impact it has on partners so I definitely sympathise that you are in this as much as your DH. It’s hard for everyone going through it.

Amazing about the donation approval, they usually do shared ones in October apparently so it might all be happening behind the scenes?
Maybe keep October free just in case 😄

@SandysMam it’s hard not to feel desperate! My priority is keeping working and getting information from the nurses at my unit but it’s hard keeping the faith when google is going on about how tired and sick dialysis patients are. I can’t find anyone who didn’t give up or reduce their hours or anyone I can relate to (unless you are a bus driver which is the only example on Kidney Care UK it seems!). Also stressing about energy costs of the machine which have been in the news - Kidney Care UK saying it costs an extra 500 - 1500 a year BEFORE the increase?! But you solved that problem upthread for me since it sounds like I will just recoup some cash by not being able to shower ever again 😭! Also I look like shit already and there is not enough concealer to fix this! If you make a new thread please tag me - i fear it will be lost forever in new mumsnet platform!!

Going skiing is amazing @renallychallenged I’m incredibly impressed! Well done you both!

@queenofwobbles don’t panic about work. I didn’t reduce my hours although I was part time anyway! The other home dialysis patients I know of were all doing it at home so they could work. - one ran a building firm, one was a window fitter, plus others with less physical jobs. Google will always show a worse case scenario but I didn’t feel sick or excessively tired on home hd. The in-unit machines made me feel ill though so maybe that’s where that information comes from. Look at sandysmam and renallychallenged dh - they’re showing you can live a normal life on dialysis!

@queenofwobbles you sound stressed! I’m sorry I think I’ve missed your story above. Are you predialysis? Worrying about work? If so then overnight peritoneal dialysis may help you there. My husband worked full time for 2 years on dialysis the first time around and is back on the same routine again now. He has actually reduced his hours with his main employer quite recently but FT was fine for a long time. I haven’t noticed the machine costing a lot to run. Also you get council tax reduction if you use a room
for medical treatment so that will give you a contribution to excess costs too.

Surely an eGFR of 76 is nothing to worry about? DH has an eGFR of 6 and he is still working full time, playing sport, travelling long haul and going out. He gets more tired than he used to in the evenings, and really feels the cold, but strangers – and friends who don't know about his kidney disease – would be unlikely to notice anything very wrong.

Dialysis will be the next step so it's reassuring to hear people's stories that it is manageable. Thank you.

Whatever you can do now @queenofwobbles (with a low gfr) you will be able to do after starting but actually you will feel BETTER so you might even find it all a bit easier! Honestly, pre-dialysis (from eGFR 15 and below) was harder than post dialysis. I felt shocking looking back, I just didn’t realise it until I started to feel better!
I think you need to find a way from moving on from the wishing it wasn’t happening to the accepting it is and feeling grateful not to be dead basically. Not sure when the shift happened for me but it helped immensely. I wish I didn’t have kidney failure but I don’t spend everyday thinking “this can’t be happening” like I did before if that makes sense (it probably doesn’t). It’s not anyone’s dream for life but it is not the worst thing in the world.
Here anytime you have a wobble.

Sorry @thing47 didn’t mean to ignore you, I’m guessing your DH is pretty close then, is he going to do PD or heamo? Hope it all goes well. The catheter insertion for PD and the training is the hardest few weeks, get through that and you’re through the worst (IME, others opinion may vary!).

Ahhh thank you everyone my post was meant to be a bit light hearted about the showering etc. but I am also quite stressed about it all. Good to know other people are finding ways to manage busy lives with dialysis.

@renallychallenged thank you and yes pre-dialysis. I have been thinking overnight PD (reluctantly but we are not exactly spoilt for choice!) so it is amazing to hear how your DH has done! I cant even begin to imagine going away with the machine in tow and the logistics of it all! You must be super organised!

Thank you @OrganTransplant123 - my job is pretty much a desk job. My manager seemed very shocked so I have decided not to tell anyone else I work with (despite everyone else moaning about their medical woes which makes me feel like this is some guilty secret!). I had one HCP who seemed taken aback that I was working and this along with Dr Google has made me doubt myself. I hope you are doing well by the way OrganTransplant123 I know you have had your fair share of ordeals!

@SandysMam thank you you really do sound like you are doing very well. I think the turning point for me will be hitting rock bottom - I am looking forward to some relief from the worrying! I have always been very grateful there will be treatment when the time comes though.

Yes, DH thinking of overnight PD as well. He actually had a tube put in over 2 years ago, but hasn't had to use it yet as rate of decline hasn't been as speedy as consultant had anticipated.

As @queenofwobbles says it is inspiring to hear what some of you have managed even at very advanced stages, so helpful to hear positive stories.

Wow @thing47 so they just left it in place all that time?! Has the tube been ok for him? I am dreading the idea of the tube the most. I hope your DH holds out as long as possible!

Yes, no problems at all. Done under a GA but a very simple procedure. You can feel it, which freaks some people out, but not see it. His consultant has warned that it might not work after all this time – could have become blocked apparently.

The only issue is he has to be careful not to inject into it – he has had Type 1 diabetes for 30+ years, and also has weekly EPO injections (which haven't noticeably had the performance impact they had on Lance Armstrong 😂)

Honestly queen of wobbles, I have an office based job and it’s absolutely fine.
I have started to realise that dialysis patients are a bit like a spectrum, like anything, some can do more than others but often because of age, other medical problems, other disabilities. There’s no one size fits all. I think if you are otherwise fit and healthy, you can do well on it.

I know nothing about dialysis, wish I could offer support to those who need it.

I had my three monthly check up last week, waiting to have an MRI as consultant not happy with the amount of cysts that were picked up when I had a scan on my ovaries a few weeks ago. Sonographer was a trainee and when she saw on my notes about my tumours she asked if she could scan me. I said yes but really I was inwardly seething as fed up being treat like a side show. Other sonographer took over at one point and must have noticed kidney cysts previously not there.

So deep joy! More to worry about. Haven't told anyone as hate stressing DH out and my family are a bunch of twats whose only offer of support is a weak offer of one of their kidneys.

Tell your DH additional, he’ll probably be able to guess something is up. I guess it’s better to pick stuff up then not, but when you have one problem it always seems like others follow. How are your original tumours looking?
I hate that weak offer of a kidney. Unless you mean it, don’t say it!! I had so many of those offers and funny how now I actually need it no one is so forthcoming! I know it’s huge thing and would never expect it but just don’t say it!

Thanks @SandysMam , I'll see how MRI goes before I tell him. Won't know how tumours are until MRI. Think shrinking thoughts everyone.

There is a special place in hell for those people who say “oh I’ll give you a kidney” but then don’t actually do it. DH’s brother said for years he would… now it’s needed he never mentions it. Just totally ignores the problem. It makes me really mad. I’d be devastated if my children grew up like that and didn’t help each other out with something so important. But I bite my tongue for overall peace. Although I regularly dream about DHs funeral where I have a massive falling out with all his dickhead family. The mind is a funny thing!