Crappy kidneys thread 2

[SandysMam]

Welcome to thread 2 for all those lucky enough to have kidney problems 😆

Kind, supportive thread for kidney related chat and the physical and mental toll living with kidney disease and general chronic ill health takes. Link to previous thread www.mumsnet.com/talk/general_health/3964834-Rubbish-Kidneys-Support-Thread?page=40&reply=117738679
which documents my personal journey from late stages CKD to peritoneal dialysis. Hoping for a transplant before this new thread is full!

Big hello to all existing members and welcome to anyone new!

It doesn’t sound great, I was never sick but definitely felt nauseous once gfr dropped below 12. Definitely chase, it can go quite quickly towards the end. You got this though 💪, this is the hardest bit and you will feel better once you start the dialysis ❤️ I have had a lovely day with the kids, feeling good and running around after them. Life will go on.

@welshmum3 absolutely chase it up. Vomiting in the morning was the start of my going downhill rapidly. After that I was vomiting randomly during the day, closely followed by complete lack of appetite. My egfr was 13 but my urea was sky high. I ended up v underweight and wasn’t able to join the transplant list for ages - much better to get things in place before you reach that stage. You’ll feel much better on dialysis I promise.

Glad you are feeling well @SandysMam Is it back to school for your dcs next week?

Yes they go back on Tuesday! We are all ready for it 😆

DH didn't feel nauseous until his eGFR hit 5, but then he said he felt nauseous pretty much constantly. I think it's a clear marker towards the next phase, isn't it?

PD not going great here tbh, they're going to try re-positioning DH's catheter next week as they're worried it's not quite in the right position and that's what is slowing the process down.

Sorry to hear that @thing47 I know a couple of people at the unit who had to have this done and it definitely sorted it out. Don’t forget how important (TMI) the bowels are too, gotta keep ‘em moving! Gets on my nerves how much they go on and on about this. I may be a patient but I do have some pride left and don’t want to constantly discus my toilet habits thanks!!

😂yes DH would definitely be with you there @SandysMam! His bowels are sluggish, but he takes a lot of laxatives already so don't know what else he can do? X-ray last week showed the catheter to be out of position, albeit only slightly. Hardly surprising as he had it in place for 3 years before he started using it.

Just popping in to check how everyone is doing.

Ive been plodding along with no issues and then the past few weeks have been interesting. Was in hospital last week overnight on a steroid drip (massive colitis flare up). Had my three monthly kidney checkup today following my MRI. My tumours have not shrunk (little fuckers) so my chemo tablets are getting increased. If there is no shrinkage after my next MRI (next year) then they will try removing small pieces of them. Terrified, as have previously been told that it's a dangerous last ditch operation where half the time you lose a kidney.

Think happy shrinking thoughts.

Sorry to hear that @AdditionalCharacter Can they leave them alone or is that also risky?

How did you get on @welshmum3 ? Hope your renal team have helped with the nausea.

All is well here. Kidney is ticking along very nicely!

Risky either way really. It's a no win situation.

Hi @AdditionalCharacter. I'm sorry that the little fuckers are not doing what they're told. Arseholes.

I'm still ticking along ok. Put some of my weight back on over the summer and have zero motivation to get back on the weight loss treadmill. Really pissed off at myself for undoing my hard won gains. Willpower at an all time low right now. Might head out for a walk now just to stay away from the snacks 😂

Keep on keeping on everyone. X

My eGFR is now 9. Had a dialysis nurse out to discuss options. Was hoping to do peritoneal overnight at home - but may not be an option as I've previously had abdo surgery (25 years ago)
They're repeating bloods as I had covid in August and might have skewed results slightly.

Nothing to report here (function tests due this month but who knows?) but sending love and good vibes to all those having bother.

Sending shrinking vibes right now @AdditionalCharacter didn’t realise you had colitis as well, some of us really do get the shitty end of the stick! Keep us posted and hope for some good news for you.

@welshmum3 you must be feeling rubbish by now 😞 it’s hard when you get so low, hopefully whatever they do, the dialysis will kick in quickly and you’ll feel better once you start. You will adapt and adjust.

@ShinyHatStand I worry about post transplant weight gain (if I ever get one!!). Do you notice you feel hungrier? I bet you still look fab and shiny 🤩
Glad the kidney is doing well @OrganTransplant123 that’s great news!

I am still doing ok, very pleased to get the kids back to school but feel proud of how I managed the dialysis and the holidays! Never thought I would manage but I did and we had a nice time to boot.

Sorry to hear that @welshmum3 if you are feeling dreadful you may need to start on HD whilst they look into PD for you. Fingers crossed the PD is an option.

Good luck with the bloods @FuzzyPuffling

I felt absolutely starving on the high dose steroids @SandysMam I was still recovering over Christmas so there were plenty of delicious things to eat. Needless to say I was back to pre dialysis weight by the new year! Once the steroids reduced to 5mg my weight has stayed the same.

Well done on managing the holidays and dialysis!

@SandysMam i started putting on weight post transplant as my appetite came back in overdrive. But I made a massive effort to sort out diet and exercise and lost about 2 stone in the first year post transplant. Then stayed steady for most of the next year. Now I've put back on about 1/2 a stone in the last few months. Need to stop that trend.

DH had his PD catheter repositioned and it has improved the process incredibly, he's now not losing any dwell time and isn't getting constant alarms either.

But – there's always a but isn't there? – he's suffering excruciating abdominal pains in the drain phases. Could be as a result of an infection, or the new position of the PD catheter, or a combination of the two. Anyone had any experience of this? He's off dialysis for the next 3 nights while they try to work out what's going on.

We're sending you shrinking vides too @AdditionalCharacter

Oh my goodness @thing47 this is why I’m dreading PD. My hospital never seem to acknowledge these problems happen or tell me the percentages of people who didn’t get on with PD but anecdotally it seems a lot! Hope they can fix it!

Sorry to hear it’s no better @AdditionalCharacter it sounds like you are back in the mill! Hope new dose helps.

Good luck @FuzzyPuffling with the tests!

@SandysMam I was super worried about weight gain too, so you're not alone!

I lost a bit of weight in hospital because I just couldn't eat on the painkillers, but I'm now seven months out and I've put on a total of 3 to 4 kilos. I was ravenous on the high dose steroids (20mg/10mg) but really noticed it calmed down at 5mg.

After a jolly old recovery period of eating all the Hotel Chocolat, I'm now managing to keep it all in check with intermittent fasting 16:8. The NHS would probably never recommend it (they always crack out that weird wheel picture LOL) but it really works for me and always has done. And some more exercise, coz it just feels good to move my body after all it's got me through.

DH would like me to emphasise that he wouldn't want to put anyone off trying PD – he actually finds the process quite straightforward and simple to manage @queenofwobbles , and the results have been very good, with urea down from 41 to 28 in just 2 weeks, and creatinine down from over 1100 to around 900. Other metrics (such as phosphate and potassium levels) have also improved, so chemically PD is doing its job very well. He's just been a bit unlucky with some side issues.

Thanks @thing47 I have heard so many bad stories about PD it does freak me out a bit that all the bad luck will happen to me! I heard draining too fast can cause pain so hopefully it’s something easy to fix like that? Hope he gets it fixed and it’s plain sailing from here.

I do manual and I did find it too me a while to get used to the drain pain. I used to use a hot water bottle for every drain but it doesn’t bother me now, like my insides have toughened up! But I wouldn’t have described it as excruciating so definitely doesn’t sound right @thing47. I hope he resolves it soon!

Thanks @MissKittyFantastico84 Lol at the wheel pic. Must be easy being an NHS nutritionalist, just being out the wheel 🤣
Do you feel like you look loads different? I hear awful things about post transplant hair loss etc! Your weight sounds good though, I could cope with a few kilos.

@queenofwobbles deep breath, slap with wet fish to the face….you are going to be fine my lovely 😆 there will always be bumps in the road but the benefits, like thing says, far outweigh those. Please try not to worry too much xx

Haha thank you @SandysMam you are always reassuring us on here! This 'drain pain' sounds horrid and sounds like its quite a common thing to have if its got its own name! Guessing this is another negative thing you only really find out about when you start (I only heard about that from another patient - my medical team just go on about how amazing PD is and never mention the downsides - I guess all dialysis types must have bumps at some point). Likewise I hope the transplant peeps here have reassured you - I too worry over the side effects - Its good to know the meds will reduce and we can try and control it with exercise or diet wheels or whatever!

@SandysMam I know we are all different and react in different ways but truly, the only side effect I've had is hungry at the start, a little bit of weight gain and MAYBE occasionally a tiny shake in my hand an hour after my AM tacrolimus. I'm convinced the tacro makes me feel a bit hot too!

I too was terrified of hair loss, having lost some after a bad (viral) illness (it grew back a few months later). I'm pleased to report that it's not happened yet.

I've asked all my Doctors about it, and one said that it is a common side effect, but it doesn't happen that frequently, if you see what I mean. One nurse said that she's only ever dealt with a handful of patients who experienced it, and she's seen a lot!!

Hope that calms your mind. The worst thing for me about the meds at the mo is remembering to take them!!! I'm constantly like 'OH NO' then 'phew, I took them'... xx

Thanks everyone. Always cheers me up getting messages from those who understand.

im. To much help wrt dialysis, it sounds very complicated and scary. Wishing you all well as start or continue on with it.

@AdditionalCharacter We do understand xx
The rollercoaster of chronic illness is never ending and it can be so draining. Also hard for those we love to understand so I always think if we can rant on here and save their ears for the more positive side of us then that can only be a good thing! I always think if I have had a week or so of no moaning it makes it easier for my DH to cope during the tougher times (when all I do is moan 😆).
Happy Saturday everyone, had a lovely day with the kids and now settling down for a film. Life is good today and for that I am so grateful.