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!

Fingers crossed his call will come soon. Sounds like he is having a very slow decline so that is something at least. Amazing to be still going as low as 5!

Hey guys - I'm just here marking my place

Glad to say that all is still going well, four months post transplant. PP is totally correct - it's like I have new batteries!!

Will always be on hand to answer any transplant Qs you guys have - hopefully you'll be able to answer them all yourselves soon xxx

Ah great to hear from you @MissKittyFantastico84 have been wondering how you are getting on!
Weather is so nice today, summer has finally arrived! Makes me feel more positive for sure.

Thanks @SandysMam! I am really pleased to say that I'm doing really well - and I am SO excited for all of you to get here. I hope it happens soon xxxx

Ah that is lovely ☺️ it’s a really nice way to look at it too, hope for the future! I am getting sick of dialysis now (although grateful it is keeping me alive and well!) so need that spark of excitement that it might not be forever!

It’s really frustrating @queenofwobbles I kept getting calls from about whether I had a live donor lined up. I felt a right billy no mates!

Glad to hear you are doing well @MissKittyFantastico84

I’m not sure if the heatwave will be a heatwave up here. Still just cloud so far!

I'm always slightly surprised that so many people ARE able to magic up a live donor! Where do they find them?

DH says he has asked the cats but one wasn't keen (too old apparently) and the other just stuck her bum up at him and wandered off – he took that as a 'no'.

So pleased for you @MissKittyFantastico84 😀

Thank you guys

I was very fortunate to have my younger brother step forward. I know how lucky I am to have had him do this. It gave me so much hope for the future when everything else was so up in the air.

Not that he's letting me forget it LOL.

Ha ha it’s going to be forever more
You: Bro, can you take the bin out?
Him: remember when I gave you a kidney?!! 🤣
He is a hero though, tell him that from us!

He is deffo a bloody hero. I still don't think I've quite processed what he did for me.

However, we had a serious/jokey chat about the fact that he has ten 'but I gave you a kidney's in his bank, that he can pull out as reasons for me to do/not do something. A bit like the Slaps from How I Met Your Mother, if you ever watched that!

I think there was a tension initially, what with me feeling incredibly grateful but just wanting to just move on with life, after feeling like the SICK PERSON for so long, to just quietly get on with being normal. NORMAL, so wonderful to be normal.

And him wanting to continue to feel celebrated, after doing something so huge. The doctors and nurses made such a fuss in hospital of him, as did all our family and friends - I do think there was a comedown from that, perhaps an anti-climax perhaps??

It's all easing with time of course. The most wonderful gift he's given me is that I feel like the person I was before. I thought I forgot who she was...

@MissKittyFantastico84 do you mind my asking, how was your brother after the operation? I've heard – as no doubt many of you have – that it can be worse for the donor than the recipient because the former sees an improvement in health whereas the latter (can?) see a slight worsening.

We would be interested to hear first-hand if that was yours/his experience, but DH says please don't feel obliged to answer if it's too personal.

Sorry, I've got that the wrong way round, it should have said the donor 'can see a slight worsening in their health whereas the recipient is likely to see a big improvement in theirs'.

Of course, I can answer - not too personal at all.

The 'worsening in his health' was temporary - in that, he walked into hospital feeling fine, and came out in pain with a scar! But he was back on his feet in a day, and out of hospital in three days.

In terms of kidney function, his was 112% before the op, and 109% after - which we all know is the difference of two glasses of water or a hot day!!

He's told me that he feels almost exactly as he did before - a few twinges in the op area, but to be expected in healing muscles and nerves.

Like I said, mentally he's had to adjust to it being over and moving on from what was quite a full on time - but that's par for the course I expect.

They really wouldn't do this op if it permanently negatively affected the donor - the oath is 'do no harm' after all xx

I hope that helps x

Basically I think that language is misleading - it's not a permanent worsening. It's just honest about how you will feel afterwards!

x

The "oath" is a myth. Medics do not take the Hippocratic oath (although they may wish to do no harm).

My DH had a stem cell transplant from his brother (entirely another sort of donation, I know, as the bone marrow replaces itself pretty quickly) and I got into a real bate about the hero worship of him from some quarters. Yes, very glad he did it, but I was the one that looked after DH (pretty much two years of intensive nursing) day in day out. Donors are great. Other people have skin in the game too!

Did not know that @FuzzyPuffling!

However, they still wouldn't do it if it was harmful to the donor. Everyone I have spoken to or met who has donated is A-OK.

It just stings a bit...

Absolutely agree MissKitty Kidney shmidney!!! :)

I'm always in admiration of those who do live donations.

I've probably mentioned this before but I was in getting an op on my kidney a few years ago, and there was a pool of three live donations happening, all going to perfect strangers. Amazing!

Hope you don't mind me jumping in here but following what i thought was a kidney stone/uti 3 weeks ago, i had an ultrasound a week ago which shows the attached. GFR was normal in Jan.

I have health anxiety related to ADHD and im hyper focusing on this right now.

Any reassurance would be really appreciated.

Well i never! I didn't know about these threads!!

Hello everyone!

I have CKD stage 3b. I found out when I was in late stages of pregnancy with DS2 4 years ago, and my blood pressure went a bit crazy and they thought it was pre-eclampsia, but blood tests showed my kidneys weren't working well.

I saw a nephrologist a few months later and he was pretty shocked it hadn't been picked up sooner as my eGFR was pretty poor in blood tests going back over the previous 10 years, but took a serious beating during both pregnancies.

Anyway, here I am, still on blood pressure tablets (a bit of a cocktail) and a bit puffy with water retention, and a bit fatigued, but plodding on and eGFR is relatively stable around 40 give or take.

It's really nice to find a community actually, so I'm pleased I stumbled across this thread!

I posted on here ages ago about DH and I thought post a bit of an update. DH has had stable eGFR of 14 for about 2 years and been activated on the transplant list for about 18 months. But by an absolute miracle we got a match in the sharing scheme on our second attempt in April. I’m the donor and I’m not the best of potential donors so it took ages to get me approved. The surgery is planned for mid July - I’m half excited half terrified. My biggest worry is that something will go wrong somewhere along the chain and the procedures don’t go ahead - but I’m trying to be cautiously optimistic (not a natural state for me !).

That's amazing news @Redbrook! Wishing you all the best of luck that it is goes smoothly for you all.

@MissKittyFantastico84 i get exactly where you are coming from. I had a friend who went through the process and in a way I was quite relieved when it couldn’t happen as I know I would have had to spend my life feeling beholden to them, which was a small price to pay but again, may have stopped me moving forward. It is the most amazing thing but I think for the donor, there is a big emphasis in the pre counselling that making the person well again needs to be enough, there should be no other expectations (probably different with a little bro though where anything is fair game 😄).

@jinglybell sorry, as we always say, can’t really comment on medical results but if your gfr is normal I would say forget about it and relax and enjoy life! Trust me, as someone with no kidney function, a normal gfr would have me swinging from the roof tops (I’d settle with 20% tbh!). Don’t waste anymore time worrying about your health until you are given a real reason to. Easier said than done I realise.

@Arsewangry great that things are stable for you. The important thing is the rate of decline, not the number really. So I was diagnosed around 40 but went down pretty quickly (so each blood test would be a drop, never particularly stable). Definitely keep on top of that blood pressure, there is so much hidden salt in food so watch that. It is worth putting the work in to avoid kidney failure (although sometimes like in my case, it just can’t be stopped).

@Redbrook I do remember you! That’s great to hear about someone actually being activated pre-dialysis, shows the system does work for some and be great if he can avoid it. Hopefully reassuring for you to hear the above about how Kitty’s brother was afterwards and maybe you can get a nice holiday planned for next year to celebrate and look forward to. It is an amazing thing you are doing but totally understand how it must feel very scary! Worried about DH but also about you! I hope everything goes ahead for you, he might even get one off the list before July though and you won’t have to do it! I always feel we just never know what will happen next in this crazy game of life.

@SandysMam yes it is scary ! I think the renal team have been very surprised that DH hasn’t deteriorated more quickly and that he’s managed to stay off dialysis all this time. They’ve been very much pushing dialysis preparation.But he definitely won’t get a kidney off the list before our planned procedure because you are suspended from it as soon as you get a live donor match - I suppose so that the chain doesn’t collapse.
I understand what you mean about being beholden to a live donor - DH wouldn’t consider anyone else being tested partly for that reason. A couple of people offered but he just said no immediately. He wasn’t keen on me doing it, but I see it as a way to get the best life for me as well. There’s no point me sitting here with 2 kidneys and a very sick husband, we’re both in our 60s so need to maximise the next 10 - 15 years as best we can.

@SandysMam I think some CKD are just unlucky - mine too seems to drop in chunks!

@Redbrook I dont think I was around when you first posted but what an amazing thing to do! It sounds stressful - I have visions of chains when you move house except this is on a whole other level! I didn't realise you got took off the list! Good luck with everything I hope it all goes smoothly for you.