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!!

Hi guys
I've decided to take a little break from this thread.
I got myself in a tizz last week after reading the dialysis discussion thinking through all the what-ifs and what-might-still-be.
I find this thread super helpful at times but at others I need to just focus on being as well as I am right now.

But please pm me if you ever have transplant related questions.

I'm sure I'll be back.

Hi everyone

@OrganTransplant123 I hope you get the appointment you need - hospital admin can be a nightmare at times!

@ShinyHatStand your story has helped me a lot and made me feel less alone. So sorry if I have come along and contributed to how you are feeling. I wish you all the best and hopefully hear from you soon

Thanks @queenofwobbles I was lying awake last night worrying that I’ll get there and they’ll be about why I’m at that clinic! The consultant seemed to think it was ok so hopefully it’s fine.

@ShinyHatStand Thanks for sharing your story with us and good luck! I can understand that you want to focus on being well. I can imagine feeling the same if I’m lucky enough to get a kidney.

@ShinyHatStand totally understand! Go and enjoy life and hopefully at some point we will join you on the other side thanks for everything xx

Hi everyone! I had the dreaded appointment at the low clearance. It turned out to be the most helpful one in years - finally got some practical answers and met a dialysis nurse (I wish they had let me access them before - some reasurance along the way would have massively helped). Still stressed about dialysis but the nurse seemed confident it is manageable, which along with this thread has given me a lot of hope.

So now its back to waiting in the limbo till results come through (and wondering why must they use such super sticky tape after bloods are taken - ouch!)! Thanks to all on here who helped with my massive wobbles about it - hope you are all doing ok today

Glad it was a helpful appointment @queenofwobbles. The sticky tape is awful - I'm only recently learning these things when I've had some tests to see if I can be a live donor. You'd think someone would invent less painful ways of doing simple things.

Thanks @renallychallenged and good luck with all the testing. Its an amazing thing you are doing, finding out if you can donate.

@queenofwobbles

Thanks *@renallychallenged* and good luck with all the testing. Its an amazing thing you are doing, finding out if you can donate.

Thanks. It doesn't seem appropriate to talk about it here but yeah it's all pretty stressful. Not sure of the right thing to do. I've found a living donor group on Facebook which i think will be helpful. I haven't told anyone in real life as I'm not ready to deal with their drama and unanswerable questions.

@renallychallenged I can so relate to not wanting to deal with other peoples drama and unanswerable questions! This whole process is becoming normal to me and when other people flap about over it or make assumptions about me it brings up a lot of stress.

It is nice to hear about things from your side - you have helped so many people on here - hope you feel free to talk (or not talk) on here whenever you like. I can imagine it is a massive deal especially with kids. I hope you get the answers you need.

Hope everyone is keeping well.

Going into hospital today for my op tomorrow. Hopefully won't be kept in for an additional night.

Hope it goes well @AdditionalCharacter - update us when you feel able x

Good luck @AdditionalCharacter hope it all goes smoothly.

I’ve made a bit of progress towards being listed. I’ve seen the surgeon and he was happy but still need a couple of other things first including a chat with the transplant coordinator. It’s good to have set the ball rolling.

Hope everyone else is keeping well.

Good luck @AdditionalCharacter - hope it goes well.

@OrganTransplant123 I wondered how you were getting on. Glad to hear you are moving forward. I am not far (in numbers at least) from the list so they are talking about getting scans and tests done. The amount of consultants and people involved is amazing! I felt like an idiot at low clearance for not having a living donor (they just kept going on about it as if its an option - looking unlikely). I am glad (well not glad, but you know) that others are in this situation.

Nice to see people still posting - I thought I had killed the thread for a few days back there!!

I don’t have any living donors either @queenofwobbles I feel like it’s declaring myself to be a billy no mates!! Glad your appointment went well.

Thanks @OrganTransplant123 I am still wobbling but trying to stay positive - resigned to the fact it is all I can do. Feel like I'm in the billy no mates club too especially after moving around a lot and having kids, but I couldn't bear to ask that of anyone anyway. Surely it is more normal not to be able to just magic one up . In any case the Dr made me feel like a right weirdo!

Hi everyone, hope the op went well @AdditionalCharacter and you recover quickly

No living donors here either!! Definitely makes me feel like a billy but it is not like donating a pint of blood!! I think they just want you to try to ensure you have made people aware I guess as it saves one from the list for someone else. I can’t bear it all though, it is so awkward when you talk about it in general and the person you are talking to gets all awkward about how they would if they could but they can’t as if they have to justify not wanting to cut body parts out for you! I hate the idea that someone might avoid me because of it or find it uncomfortable! I think that’s probably why I try to hide my illness a lot and pretend to be fine.

Been feeling pretty good though, mentally and physically. Sure that will change soon but trying to enjoy it while it lasts!! Never thought I would be ok with such a low eGFR, just wish I could go back 5 years and tell myself not to waste so much time worrying.
Will deal with tomorrow when it comes.

@SandysMam they told me one person went all the way down to eGFR4 before dialysis! Glad to hear you are doing ok, you always make me feel like I can do this too! I wish I could go back and tell myself to chill out too - I have probably worried my kidneys away! Feeling mostly ok here too but oh my goodness the tiredness and sometimes the dizzyness! Hopefully some meds can tweak these symptoms a bit but I am in the middle of the dreaded wait while snail mail from hospital gets to GP.

Thanks everyone. I'm now home. Really sore and bruised as the stitch my femoral artery didn't work, so had to have a lot of pressure applied to make it stop.

Otherwise it went well, hoping they've managed to block the required arteries. The one they did last year, the coil wasn't fully blocking the artery so had a bigger one put in and another artery blocked as well.

Unfortunately they couldn't see any good arteries to block on my other two tumours, so have to live in hope that the increase in meds will start shrinking them.

I was on a ward with two women just starting their dialysis journey and was thinking of you all who are currently going through it.

Hello lovelies, just checking in with you all.

So my surgery was 5 weeks ago and although painful for a few days, is now completely healed and pain free. I started PD dialysis a week ago on one overnight bag. I’ll start adding day time bags tomorrow and gradually increase until I’m at 4 a day every day. I’ve chosen to stick with manual PD for the time being as I’m on furlough (and I’m still up for a wee at least twice a night which would make using the machine impossible)

It’s fine. It’s time consuming but am finding a routine now and it’s getting easier. The family treat it as a spectator sport and pile into the bedroom when I do my treatment. It’s actually rather sweet. The supplies from Baxter aren’t as gigantic as I thought they would be, they’re sending 2 weeks at a time rather than monthly so that helps.

Hope you are all doing ok

Ah glad your surgery went well @AdditionalCharacter it sounds pretty brutal to be honest!! You are obviously made of tough stuff!

Hi @HairyPotter, have been thinking of you and saw you pop up on another thread and was so pleased…I thought if she’s posting then she must be ok ish!!
Glad you seem to be settling ok on the dialysis, hopefully as you get the hang of it you may actually feel better as time goes on. Can you keep us posted on any hints and tips? Or even if you have a day where you feel like you can cope and life isn’t so bad on it? Only if you don’t mind, I really grab hold of little nuggets like that and they give me hope. Do you mind me asking what your eGFR was before you started?

Glad I make you feel better @queenofwobbles, I know it’s only a stupid Internet forum (no offence mumsnet ) but I really like you lot and feel much less alone because of you all.
We CAN all get through this, aim to find a bit of joy in each day and appreciate life in a different way.

It really has been ok so far. I had a bit of ‘drain pain’ when my tube was flushed for the first few times. It was in my chest and shoulders and was more of a dull ache than a pain. Lasted a few hours and have been absolutely fine ever since.

My daughters both came to the hospital for training which was hugely helpful. I don’t know about you but my concentration is shocking these days. One took comprehensive notes while the other watched what was going on. It’s been really helpful having her notes to refer to. They are fab and I still need them a week later. It helps when one of them pops up to help even if it’s just cleaning surfaces and opening fluid bags. That saves another trip to wash my hands (we are on a different floor to the bathroom which is a pain)

I bought a couple of PD belts, I used them a couple of times it find it easier to tape to the to my stomach as they are rather warm. The hospital gave me a stretchy belt to clip the tube in when I’m in the shower. It’s a huge help as there is a bit of weight to it and it’s uncomfortable if it’s not secured. Top tip right there.

My GFR was 9 by the time I had surgery, can’t say I feel any better as yet but it’s early days. Please feel free to pm if you want. I’m more than happy to chat more about it if you’d like.

Hi @HairyPotter thanks for coming back and updating us. I am glad to hear you are doing well - sounds like transition to PD has been a smooth one for you. Hope you feel some improvement soon

I dont know what to do about dialysis HD or PD. We live in a shoe box house so I don't know how I will fit in these millions of boxes (probably the shed route)! When I met the dialysis nurse they pushed PD quite heavily (sceptical me wonders if its cheaper on the NHS or something!) but I am feeling unsure about the fluid and the catheter. How does it feel? I have little kids so worry with PD they will be climbing all over me and what if I can't pick them up. I also work and am hoping to keep my job. They suggested if I went down the PD route the machine overnight would be better for me. I hadn't thought about what happens if you needed the loo!

Ouch that sounds painful @AdditionalCharacter glad you are home and recovering.

So glad to hear all is going well @HairyPotter it sounds really useful to have your daughter’s in the know and able to help.

You can wee on nighttime PD @queenofwobbles I was planning PD so asked lots of questions of the nurse. Apparently you have to wait for the right bit in the cycle though which sounds a bit of a faff. The main downside to HD is the time it takes. I try as much as possible to do it during the day but fitting in work, looking after the DCs etc means it often falls into the evening. I find it really hard to do then as I’m so tired.

@SandysMam I know I’m HD but it’s actually ok. We had a night away recently (just one!) but it was so wonderful to have a break from everything. I’ve got clearance for a long weekend soon as long as my bloods remain ok so that’ll be even better! Obviously if I wanted to longer holiday then I’d have to take the machine so I’d rather stick to short breaks and actually have a break from the dialysis!!

That's handy to know @OrganTransplant123! Your days do sound super busy. I am glad you are managing it all though and surviving this. Have you thought about nocturnal HD? No idea if that is a realistic option (and it sounds a bit scary!) but I read some people do that. Are you still managing to get stuff done while on the machine?

Apart from keeping well I am worried about fitting everything in. We have not over stretched ourselves (hence shoe box house) and could probably get by on DH salary, but it would be hard and in any case, work keeps me sane. People say you should get insured for stuff like this, but for me this was a pre-existing condition so I am screwed! Although who knows if a transplant could change everything again in the future.

Does anyone know how long the PD set up can take to get on / off the machine?