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!!

Happy Xmas all
Hope you're all happy and reasonably healthy 😁

Can I have a hand hold?
Got some routine but deeply unpleasant gastro check up ups this week. I was ticking along happily in "I'm healthy now" mode and the thought of all this happening intermittently for the rest of my life has really got to me.

Of course @ShinyHatStand it’s normal to have a wobble. You are healthy though, I bet the average person couldn’t cycle like you! I’ve had a few endoscopies and colonoscopies if it’s anything like it. Just look upon it as a mini MOT.

Be honest if you are nervous. I had a liver biopsy about 15 years ago and I was so scared. I was having a little cry with nerves. I can’t even explain why I felt so upset, maybe like you it was the return to being ‘ill’, but the nurse was absolutely lovely and held my hand all the time.

I had my stent removed yesterday. It was interesting to see the inside of my bladder!

Thanks @OrganTransplant123
It was all done this morning. SO much better than the last time around. No vomiting, no nausea, no pain, no overly hysterical tears.
Feeling much better now 😀

Sorry @ShinyHatStand I missed your call when you needed us!! I’m so glad it went ok, it’s so shit when something rears it’s head and you go back into patient mode but snap back out of it!! You are healthy and you of all people know that if you’re not, there is stuff that can be done to get you back there. Hope you get some rest xx

Thanks @SandysMam

I was too late, sorry shiny! Glad all went well. Have a nice cup of tea and a rest. I always need a nap after stress!

Have eaten my body weight in biscuits and now off for a bracing walk in the cold

Ah thank God for biscuits!!! We still have so much Christmas rubbish left, really need to chuck it out but can’t bring myself to so eating it instead

For some reason in the post procedure sitting area I got given 2 packs of 3 biscuits with my cuppa and nobody else got any. I must have had my "feed" me face on.
And I had some in my bag just in case 😁

@OrganTransplant123 I missed the bit about your stent removal, did that all go ok? I must admit, I am quite squeamish about all that!! Hope the new kidney is settling in well!

@SandysMam stent removal was absolutely fine. Very quick, it felt odd and uncomfortable but it was over so quickly. Took about 2 mins to remove! The stent made me feel like I needed to wee all the time so I was thrilled to get it out!

I’m eating all the Christmas rubbish too. I’m so hungry all the time, I’m blaming the steroids.

Stent removal made me so happy.
Had intermittent pain and pink wee before then and was so pleased to get it out.
So pleased you're still doing ok.

Hello Rubbish Kidneys xx I hope you're all doing well. I dropped off the thread but I've kept on checking in.

I wanted to reach out because I have a date for my transplant - it's happening in the next few weeks. I've been feeling quite poorly so it's obviously the best way forward but I'm so scared.

I'm scared mainly about the post op side effects of all the drugs. I think that's always been my biggest fear - aside from it all going wrong, obviously. I'm scared about all the random things that seem to happen.

Please tell me it's managable post-transplant peeps? Do you feel better overall??

Also, any recommendations for things I need to pack in my bag? Already seen some suggestions which I've added to the list. xx

Would love your words of advice guys. Really feeling the fear today! xxx

I just started another thread about kidneys, hadnt seen this one.!
Ive been told my creatinine levels are 122. I cant seem to relate this figure to this eGFR dont know what this is. Figures are from oncology chemo dept. Is this very high ?

That’s exciting @MissKittyFantastico84 happy to answer any questions. Post kidney transplant 7 weeks ago I feel amazing! I’ve so much energy, the fatigue creeps up on you and I hadn’t even realised how bone tired I was. I’ve been on transplant meds for 18 years (liver transplant) and have felt fine on the meds. I currently have a prednisone moon face but that’s the worst of it!

Hi @thereisonlyoneofme without knowing your egfr it is hard to say. Are they going to retest? For context when I was on dialysis mine was usually 300-400+. Yours is above normal but relatively low in kidney disease terms.

Happy New Year everyone hope the cheese pile is going down for those who partook!

Hi @MissKittyFantastico84 I followed your old posts and wondered where you had gone! Congrats on finding a donor! I dont have much useful advice but try not to worry and Ill keep fingers crossed for you!

@ShinyHatStand sorry to hear you had a wobble - hope things are improving. I agree with the others you are super strong and (with biscuits) can deal with anything 💪

@OrganTransplant123 oh my I googled stent removal and wish I could now un-google it! Hope you are still doing well. Wish they could measure the tiredness somehow and give us a 'bone tired card' to exempt us from stuff like cleaning the house!

Hi @MissKittyFantastico84 great to hear from you! Keep us posted as to how it all goes and will be thinking of you and wishing you all the best!!

@thereisonlyoneofme that is still pretty low so don’t panic just yet, you might have been dehydrated when bloods were done etc. There is a long way to go between raised creatinine and kidney failure so try not to panic. I am on dialysis and have had a lovely day, been for a gorgeous walk in the country, looked after my kids like any normal mum and just doing dinner now. Life goes on whatever so stay calm

Thanks for keeping me in your thoughts everyone! You've all been in mine.  I needed to take a break from it all over the last few months, going through the transplant process and watching my function slowly creep down. It's been a tough time, mentally, but hopefully there is light at the end of the tunnel!

So happy for you @OrganTransplant123 that it all came around so quickly - and glad to hear you're feeling so much better. I think I've got to the point now where I know I feel crap but I no longer know just HOW crap. It's been such a slow creeping slog to this point that I probably feel awful and don't even realise!!! I'm looking forward to more energy! And eating avocados!!! LOL.

And @SandysMam - I'm so happy to hear that dialysis hasn't been the ordeal you (we all) imagined. Amazing to hear how you're getting on with things and feeling more positive. Hopefully I can go through this and answer some more questions for when your call comes (soon I hope) xx

Glad to be back with my kidney crew! I will keep you all posted - and will probably be back for some moral support over the coming weeks x

@thereisonlyoneofme I have just asked something similar of my consultant today, you need to know what your personal baseline is as depending on your body type you will have a different baseline to someone else. For example, a larger woman might have a baseline of 100 and a level of 115 which is less concerning than a tiny woman with a baseline of 90 and a level of 115. The other brilliant women on this thread are far more experienced but this is fresh in my mind from today so I hope that makes sense and is correct.

Also there are eGFR calculators online, such as this one :
ukidney.com/nephrology-resources/egfr-calculator

I think that’s a really good way to explain it @PineappleSun. Hope your appointment went ok, any update?
Also, I wish I hadn’t spent so long obsessing over the numbers. So much of it is how you feel. It is mentally torturous watching that eGFR creep up, it’s crazy to think now it’s gone completely I am actually in the best place I’ve been for years. I know there is plenty more shit that could hit the fan (and I’m sure it will for me, it always does!!) but for now, I feel liberated from all that. Worlds away from where I was when I started the thread.

@MissKittyFantastico84 there is some advice on what to pack a few pages back…I still haven’t packed my bag!!

EGFR creep down, wish it would creep up!!

@SandysMam thank you for asking, it went very well. I don't want to say too much or rub it in but my eGFR has crept up a bit and should a little more (apparently it takes 3 months or more if breastfeeding for renal chemistry for return to baseline after pregnancy) so while no one can predict the future, my consultant thinks I'm unlikely to decline further and will probably hang around stage 2/3a in the long term.

Morning! Oh that’s fantastic news, hopefully you can relax and enjoy your baby now!! Worth looking into some simple things to protect your function, so no ibuprofen or aspirin, keep an eye on your blood pressure and generally keeping fit and healthy (no smoking etc). Wishing you good renal health for many years to come!!