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 know what you mean, I’m constantly freezing as well, and as for sleep, yes I can fall asleep instantly most days. I try and squeeze in a wee disco snooze during the day if I’m off. Bed is normally between 9-10

I wouldn’t say I was brave, definitely stupid when it comes to risk. Everyone I told I was going looked at me as if I was insane. I do work in the travel industry so it actually felt quite normal especially as my colleagues were still flying abroad. It wasn’t until I started telling people outside of my travel bubble that the doubts started to creep in. I’m guilty of trying to cram too many holidays in while I still can.

I’ll save that thread ^ until my lunch break tomorrow. It sounds interesting.

Renally thanks for coming on. It’s really interesting to find out how it all works in practice. I’d heard it was 40 mins to set up so 20 sounds far better. Although I imagine he’s got it down to a fine art. Do you find the machine noisy? Is it easy to sleep while he’s all wired (tubed) up? Does he get much discomfort? I think I’m quite stoic but the closer it gets the more I’m starting to have slight wobbles. Just need to give myself a shake though. Could be much worse.

Morning, yes thanks @renallychallenged interesting to hear from your perspective.
Definitely at the point where I am looking for positivity though (I have had some very dark times where I have felt I would rather be dead than face this) so stories of holidays post transplant/dialysis and happy times definitely help, thank you!

For me, I will be happy if I can just still have enough in me to look after my DC and so their lives aren’t impacted too much.
I agree about things like work being important for self esteem. We live in an image obsessed society, where perfect lives are documented everywhere and kidney failure definitely doesn’t fit in with that!

Can I ask if you still sleep in the same room as DH while he dialysis’s? Also, does he look like shit? I am so afraid my DH won’t want to be with me any more and this is going to give him the ick which we all know from Mumsnet is irreversible!

Oh bless both of you; it is such a hard time but I think the "unknowns" make it worse.

Obviously I can only speak from our experience but the dialysis has actually made DH feel and look BETTER. The worst time for him was the couple of months pre dialysis & for the first month of so while he gets used to it.

Pre dialysis he would sleep straight after work and most of the weekend. We didn't attend a family wedding because he was too sick. He would vomit in a morning & struggle to eat. His skin was quite frankly a little grey. Also I think there is a social issue at that stage because obviously you're very ill but for him psychologically because he wasn't on dialysis he felt like he didn't have a good "excuse" for feeling bad and so covered it up more.

Once established on dialysis it takes the edge off all that. No vomiting. Less tiredness - in fact it's being on the machine for 9 hours overnight that makes him go to bed now, not feeling tired . He can walk, cycle, drive long distances etc. Play cricket too (with an abdominal guard). His skin looks better.

One issue you might find if you're body conscious is the abdominal bloating. Obviously you've got the catheter so maybe won't want to wear tight clothes anyway, but then because the fluid pulls water out of your blood (to replace the kidneys making urine) you can end up quite bloated by the end of the day. Leggings & loose tops probably need to replace and more restrictive evening attire!

I do think the nature of PD helps the above as it's a gentle dialysis that gives consistent removal of the toxins every night. I think HD is much harsher on the body as you get peaks & troughs & it can affect blood pressure too. I would be worried if he was going into HD but again that's probably because it's an unknown to us.

Regarding the machine : yes it is a little noisy. More of a constant vibration and then some pumping sounds in the different phases. We have put it on a thick towel which helps. It's honestly not that bad though. We both sleep through it fine. Both times he's started the treatment (once 10+ years ago and once this year) the first night we were both awake listening to every noise but then from the second night we slept fine. It's a bit like having a newborn - you listen to all the snuffles at first but then learn to ignore it unless there's an actual problem😂

Also if you ask your consultant you should be able to access specialist counselling. DH has done that a couple of times and it definitely helped. Ironically the time he needed it most was a few years after the transplant when he first realised it wasn't going to last forever. So when he was physically well but struggling emotionally. My point is it's fine to ask for help at any stage when you feel you need it - don't feel you have to wait for a certain eGFR value as it doesn't always correspond to your needs

Thanks @renallychallenged really appreciate you posting. Have you seen the Queen of dialysis on Twitter? She does a good Ted Talk too, she can’t have a transplant but lives very well on home HD. Do you think your DH wants to go through the transplant process again? You sound like a lovely wife, it can’t be easy for you either x

As for the bloating, 2 kids have entirely done for my waistline!! At least some fluid might help pump out the sagging skin
Will definitely start looking for floaty bits though, and always love leggings, thank you!

Hi all

I'm pleased I found this thread as there seems to be very little chat on here about kidney disease considering how prevalent it is!

So I was diagnosed completely out of the blue after some blood tests for something unrelated. I was mid 30s and just about to start a family with DH. All of a sudden, the tiredness and headaches that had crept into daily life without me really realising made sense.

At this point my eGFR was 21%. I had another 18 months before dialysis where I was then at 7%. I unfortunately got a virus about a year after initial diagnosis that knocked my eGFR down quite quickly. Up until this point I'd kept working (office job) and noticed some tiredness but not much else.

I really felt it once on dialysis! I chose peritoneal as wanted something I could manage at home and still work with. It took a bit of getting used to (especially the daily laxatives) but I did feel I could manage it well.

Obviously it does hit your relationship hard and there were points when I know my DH felt more like my career than husband but we got through it. My work we're also incredible and set me up with a home office so I worked from home a few days a week to manage energy levels.

I was extremely lucky to only need dialysis for 7 months before receiving a transplant from an amazing live donor who was and is an awesome friend. I was so lucky to have a good bunch of people come forward for testing but my friend was the best match.

Recovery was slow and it didn't feel like a magic switch but after 4 months I began to feel like my old self again.

That transplant was 4 years ago and I'm now awake and feeding our 8 month old son.

Honestly there were times when I never thought this would happen and he is a blessing every day. I was lucky to have a complication free pregnancy and kidney is now fully recovered - so much so that I'm hopeful of baby 2 at some point.

There is always the worry in the back of my mind that the kidney will fail and I won't be able to look after my family as I do now but I just keep taking it one step at a time and assess things with what I know at that point and how life is now, and try not to worry about the future.

So I've been through a whirlwind 6 years from completely surprising diagnosis, to chronic illness clinic, to dialysis, transplant and recovery. And I'm very aware that a lot of people's journey is not so fast! Extremely grateful every day.

Ah hi @AchyBreakyFart and hi baby Achy!! What a lovely outcome, congratulations on your baby!!

In someways I feel lucky to have been diagnosed early, I have had time to get used to it but that has also been a bit of a curse...living blood test to blood test, constant feeling of impending doom. It must have been a huge shock for you!

Stories like yours are very inspiring though, thank you! Please feel free to share any fears here though, it’s nice to have a bit of a vent and save the ears of our nearest and dearest! I know someone who had a really successful transplant that lasted 22 years so pray for yours to last the distance!

Can I ask what your eGFR is now with a transplant? Go on, tease us with your big number

Congrats on the transplant Achy, and baby of course.

DH had a similar experience the first time round - he was eGFR 13 at diagnosis after going to GP feeling a bit rubbish 🤨
Dialysis within 4 months & transplant within 2 years. Obviously it's all a massive shock that way, but Sandy I do think it's easy to underestimate how emotionally traumatic living from blood test to blood test is.

@SandysMam

Thanks *@renallychallenged* really appreciate you posting. Have you seen the Queen of dialysis on Twitter? She does a good Ted Talk too, she can’t have a transplant but lives very well on home HD. Do you think your DH wants to go through the transplant process again? You sound like a lovely wife, it can’t be easy for you either x

Yes he is now back on the list for transplant. Luckily the first one was pretty straightforward so that feels like a very positive thing to be waiting for. Fingers crossed the next one will be straight forward too. Average wait is 3 years though so not expecting it to happen soon.

Previously he had a live donor. There are a couple of people in the running now but I don't think either are as great option as the first was. All tests etc are on hold now due to covid anyway so not expecting anything to happen soon.

Hi all, thought I would come on and reassure you having lived with CKD for just under 20 years. I crash landed into kidney failure at the age of 17 when I woke up one day with a headache and nausea, my Mum booked me into doctors for a blood test, 2 days later she received a call to be told they're sending an ambulance to me. Anyway I was lucky to receive a live Donor transplant at 17, and lived happily with it had my daughter whilst transplanted. It only ever worked at about 27% but was like that for 14 years when it failed very quickly. As I was going for a pd catheter to be fitted just before the op they did a pregnancy test and it was positive! Quite a shock, the next day I started heamo dialysis and 9 months later our son was born. About 6 months later I switched to PD, whilst on it I managed holidays with the kids, did all the activities with them, running around soft play etc and generally felt well on it. It took me about 25 minutes to set my machine up, and 10 minutes in the morning. As I did so well on it, I only had to do pd 5 days a week and gave me weekends free to go away etc. December 19 I received a 2nd transplant. As easy as it is to say, when dialysis comes follow the advice from your nurses, dieticians and you really can live a normal life on it. (I worked 4 days all the way through this, commuting to London etc)

Such an inspiring story @midgetem and congrats on your babies!

I'm so hopeful that I'll get to have another but it's such a difficult decision as each time you put a bit of pressure on the kidney there is a risk.

I also did well on PD and would thoroughly recommend it. And I agree about listening to nurses and taking advice. The only downside was emptying the bags in the morning as the weight of them was so heavy!! But I also managed to swim weekly and went away int the UK a couple of times.

My eGFR now hoovers around 55% and creatinine around 100ish. I'm so fortunate that it went up briefly in pregnancy but seems to have come back down again.

Having my son later than I would have liked does upset me sometimes but I think having been through all the illness and what comes with it just makes him more special and appreciate all the little joys we have

Yes a massively inspiring story @midgetem thank you so much. Exactly what I needed to hear and I will read over and over again. Amazing about the pregnancy on dialysis!! You should write a book, what a rollercoaster!!
If I can just be there for my kids, then I will feel happy, I just always thought dialysis would mean I would turn into some sort of vegetable! I don’t think it helps that a lot of the patients I see at appointments are very elderly, whenever I see a young one I want to run after them and scream what’s it like, what’s it like, like a maniac!!! Definitely the unknown. Thank you so much for posting everyone, I feel so much less alone, I cannot tell you.

I should add @SandysMam that we have a very boisterous Labrador which we got when I was diagnosed and I walked him pretty much every day while on dialysis

I agree that most people I saw at the clinic were elderly or had other significant health issues so I also worried about the impact

It was a faff to connect to overnight, I did have to be careful not to overdo it, but I worked full time (mix of office and home), walked the dog and did normal household chores without too much bother.

And it was a great built in excuse for a long sleep as I set mine for long dialysing so had to be plugged in for 9 hours which meant making sure I was tucked up at a reasonable time (often with a movie) and couldn't get up too early. But I had a long extension lead so I could nip to the loo and probably also would have made it into a couple of other bedrooms upstairs if needed.

Thanks @AchyBreakyFart again, all of that massively reassuring. You lot are inspiring and hopefully anyone reading this thread who is also feeling desperate will also feel the same. The Queen of Dialysis runs marathons and sky dives...I would never do that even with full kidney function but walking the dog and working a bit would be incredible.
@AchyBreakyFart don’t worry about having your baby later in life, I think more people do now anyway so it’s not such a massive deal.
We had my second after I was diagnosed and it has definitely reduced my function faster but very pleased we did as I like the idea they have each other and he is a superstar. However I can also see a million advantages to only having one (like a million!!!) so don’t feel too bad if you make the decision to have an only if that is right for you, it is a huge decision to make anyway without factoring in kidney problems.

@SandysMam

Yes a massively inspiring story *@midgetem* thank you so much. Exactly what I needed to hear and I will read over and over again. Amazing about the pregnancy on dialysis!! You should write a book, what a rollercoaster!! If I can just be there for my kids, then I will feel happy, I just always thought dialysis would mean I would turn into some sort of vegetable! I don’t think it helps that a lot of the patients I see at appointments are very elderly, whenever I see a young one I want to run after them and scream what’s it like, what’s it like, like a maniac!!! Definitely the unknown. Thank you so much for posting everyone, I feel so much less alone, I cannot tell you.

There a realty chance you will feel better once the initial settling in to dialysis is sorted. Physically and also emotionally as you'll have the answers to some of your worries.

Whats the expected timescale to dialysis for you now? Do you have the chance to discuss With nurses?

I hope so @renallychallenged and I think the waiting is one of the hardest things. I am now at the point where eGFR is consistently below 20 so going to talk with your transplant team about getting on the list, and the dialysis team about options. I always thought I would want to do in centre HD as hated the idea of anything at home but you lot are selling it to me! Especially the long cord had no idea this was even a thing!!
How did you do it @midgetem with a newborn? Did you leave all the night feeds to your other half? Or maybe you dialysised in the day (I always think it would at least give me a sit down, which I never get with my kids!!).

The transplant team, not your one!!

@AchyBreakyFart I think it's a difficult decision to make. Never be afraid about being a late Mum, we have babies late to make sure we're strong enough to deal with everything. Our babies are a sign of what we've been through and achieved. Renal babies are such treasured babies (even now whenever I go to hospital we get stopped by all doctors, midwives, nurses etc to talk about our 2. That shows me what a massive miracle they are. Your baby is a miracle, and 55% function is amazing! If it stays there no reason why you can't think about a second! My first transplant never reached those levels and my second is only at 60%, creatinine of 85 - 90

You will make the right decision for you and yore family and I am sure your team will support you through it

@SandysMam dialysis with a newborn was fine, I dialysed for 8 hours over night and luckily for me my renal team were fully behind me. So my connection drained straight down the toilet so I never had to manage heavy bags, and my team paid lots of money (my consultant said he didn't mind as with my pregnancy they were getting a higher budget the next year haha) for my to have a connecting lead that was very long but also allowed me off the machine 10 times instead of 1. It was a godsend, and in mornings if I had time left both would be in bed with me watching TV whilst I finished. I loved overnight but mainly because during the day I was able to do nursery drop offs, baby group and meet with my friends etc.

When they discuss transplant they should hopefully also arrange you a meeting with your consultant to discuss dialysis and what suits you. Heamo was OK in centre but I found that the 4 hours could easily become 5 /6 hours out of the house as a warning. But then, on heamo I met my dialysis family (as my hubby calls them) an amazing group of patients who supported me through so much and still do! Unfortunately we sadly lost a member earlier this year but most of us are doing well, one of the ladies has been doing heamo dialysis for over 10 years and still works part time. So whatever route you do, speak to your team and they will help you find a dialysis which suits you and your lifestyle. Either way I'm confident you will be here for your children as they grow. Our renal teams are amazing, good luck with it all

@SandysMam

I hope so *@renallychallenged* and I think the waiting is one of the hardest things. I am now at the point where eGFR is consistently below 20 so going to talk with your transplant team about getting on the list, and the dialysis team about options. I always thought I would want to do in centre HD as hated the idea of anything at home but you lot are selling it to me! Especially the long cord had no idea this was even a thing!! How did you do it *@midgetem* with a newborn? Did you leave all the night feeds to your other half? Or maybe you dialysised in the day (I always think it would at least give me a sit down, which I never get with my kids!!).

With peritoneal dialysis you either do:

"manual" = 4ish "exchanges" a day. An exchange is where you drain out the fluid from your abdomen and put fresh fluid in. A manual exchange might take 40-60 mins so you'd do one at say 7am, 1pm, 6pm & bed time. To do that you'll need a clean work surface at home and the ability to commit to a rough schedule of being home for an hour or so for each time. Although I have been online and seen people doing exchanges from their car and all sorts, I'm not sure how that exactly works for hygiene.

Most start PD on the above schedule. As that can be quite restrictive for work / days out, many people then switch to the automated/overnight version.

"Automated" = hook up to machine at bed time, machine does the exchanges for you overnight (8-9 hours) and then you disconnect in the morning. Depending on the set up on your room you will either drain the fluid into drain bags which then have to be emptied, or DH drains directly into the toilet and so nothing to faff about with in the morning. You can connect using quite long leads to allow you to wander around the room / to the loo depending on your house layout.

The catheter itself does have to be kept clean and dry. Showing is a faff as have to use waterproof dressings etc. But I don't know how that compares to a fistula for HD, I can't imagine that's much fun to have either.

Its completely personal choice but for young and otherwise healthy people who want to make dialysis fit round their life (rather than commit to going to hospital 3 times a week) I wholeheartedly recommend considering PD.

Also as you have all the equipment yourself you can go for weekends away and holidays very easily if you drive. Kid friendly stuff like holiday cottages and Center parcs are very easy. We've been all over the place and everyone are usually very accommodating.
We haven't actually flown with the machine yet (covid cancelled a planned trip to France in March) but everything was set up to do it.

When you get to the stage of making decisions I am happy to send photos of our set up if you PM me

You should get to know the community nurse team who will provide all the training you need and are always available on the phone for help or advice. They monitor the effectiveness of the dialysis via your bloods and also the overnight machine is connected to the internet and sends various data off to them.

The manufacturer of the equipment provide a 24 hour helpline also if you ever had issues in the middle of the night (remembers a power cut at 2am in remote Scotland circa 2011 😆😆)

@renallychallenged it's lovely to hear from you and your opinion. It helps me to understand what my poor husband has been through and had to put up with being at my side. I'm glad your husband is back on the list and I hope he stays well!

[quote midgetem]@renallychallenged it's lovely to hear from you and your opinion. It helps me to understand what my poor husband has been through and had to put up with being at my side. I'm glad your husband is back on the list and I hope he stays well![/quote]
Thanks. I'm not gonna lie we all have our difficult days, but I'm lucky that naturally both of us are quite pragmatic people and we just kind of get on with it. Maybe too much so sometimes as I think even people who are close to us forget what's going on in the background.

I hope you all have supportive partners. It will be hard for them too. Happy to PM anyone who wants a rant 😊

Hi guys, just wanted to tell you how much more positive I am feeling this week. The sinking dread has reduced so much and instead been replaced with thoughts of boisterous Labrodor’s, cricket and newborns (not that I am planning on any of those things but the fact this has all been managed has lifted me so much!). Thank you. I am by no means expecting an easy ride but for the first time in a long time I have felt there might just be a future past end stage.