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!

How is everyone getting on?

Sorry I've not really been on much, started a new job and it's been exhausting.

I had my routine 3 month check up and my doctor isn't happy with me and my pain levels since starting my new job. I was hoping I'd get used to working practically full time and the pain would subside, but it only seems to be getting worse as the weeks go on. She wants me to reduce my hours (which isn't possible) and has also put a referral in for the renal social worker to speak to me about what help I could possibly get. Seems quite scary as I don't see myself as ill, I've just been powering through and putting on a brave face, while mostly being whacked up with codeine.

On the theme of silly things people say, I'm fed up with people offering me their kidneys when I say I have issues with mine, like that's a miracle cure and they're doing you a service. It's far more complex than just whipping yours out! Idiots.

@AdditionalCharacter you should say 'Oh yes, thanks, Can I have both?'

Sorry to hear work is proving a bit of a struggle, how come you can't reduce your hours, is it an all-or-nothing job? Are there any other adaptations that work could make which would help you? Being in constant pain doesn't sound like a lot of fun…

Hi @AdditionalCharacter that sounds hard. If the pain is debilitating maybe you can apply for PIP or something so definately speak to them. Can you look for a less physical job or ask for adaptations? It must be hard working through that

Also please send these people offering kidneys my way if they have one spare please!!

Hi everyone, happy December, how the F are we here already?? I remember this time last year thinking “I’ll definitely have a kidney this time next year” (clue…I only really go on mumsnet whilst I do my dialysis so 👋🏼 😁!). Still coping well though and feeling good, counting my blessings I am here for my children and there is something that I can do to keep me with them.

So sorry to hear you are in pain @AdditionalCharacter that is rubbish. I wish they could do more for you. It’s so hard to balance the need of our bodies with the need to earn a living, you read about people having it off on benefits yet whenever I do a check, the help (if you get it!) is pretty paltry if you can’t work or need to reduce. I hope you can find a balance soon.

Hope everyone else is doing ok and get some joy out of Christmas. I will be guzzling my phosphate binders so I can enjoy the cheese and chocolate 😆
If things are tough, keep going, better days to come xx

So, I started peritoneal dialysis in September and I have to say it was a total disaster from the start. Tube was in the wrong place, sorted that with huge amounts of laxatives 🤢. Still wouldn't drain. Had a pleural effusion - dialysis fluid around my lungs. Had that aspirated. Tried again - massive fluid overload and another pleural effusion. Spent 8 days in hospital and had a central line put in. Had two weeks of haemodialysis now and feeling much better.
Started the work for transplant - echocardiogram shows I've got a leaky heart valve and some degree of heart failure, but they'll look at that again as I had the issue with fluid at the time.
More worryingly, there's a query about a mass / possible tumour somewhere - getting that investigated Wednesday 🤞

DH got his kidney last month! Waiting list for just over 3 years but had only been on dialysis for about 3 months prior to transplant. He's very lucky, and also very aware that, as others have posted, his fortune comes at a terrible cost for a grieving family somewhere. Truly, organ donors should be acclaimed far more than they are.

@welshmum3 DH also had a rough time on peritoneal dialysis, it just didn't really work for him – 2 infections in under 3 months, both requiring hospital stays, and lots of pain and discomfort throughout. He had a procedure to move the catheter which improved the drainage rate but left it excruciatingly painful (he said worse than having a heart attack and all the operations that resulted from that). Better when he switched to manual rather than the machine but still not great so you have our sympathies.

He has stenosis and a heart murmur but renal team felt it wasn't bad enough to warrant delaying transplant so hopefully you will be the same. Best of luck for investigation on Wednesday.

@SandysMam happy December back at you I always think it’s easy to tell someone go part time or not worry so much if you are on a consultant salary! Glad to hear you are doing ok. Rubbish to hear you are still waiting, keeping fingers crossed for you.

@welshmum3 oh no! it sounds like you’ve been through the mill. Hope the HD is working out now - are you doing that in centre? Will you stay on haemo? Hope you are feeling a bit more stable at least.

Hello all,
Sorry I've not been about for a while - I've moved house, and we all know how awful that is. Two weeks in the new place now. I don't feel settled or straight, The bathroom is unusable (leaks and cold water only) and everything else needs new. But we'll get there in the end.

So no kidney news. Last call was protein in two consecutive tests but the (old) GP wasn't going to do anything about it. I wonder how the new GP will be?

Hi, bit of an update from me. We got a match in the sharing scheme in the April run and had our procedures in July. I am so very very grateful to the other(s) in the chain. I’m pretty sure my kidney went to someone on the deceased donor list so there must have been a true altruistic donor at the start of the chain.
We were both home within a week but recovery for both of was much slower than I had anticipated and we needed quite a bit of help in the early weeks. DH also had to be re admitted for a couple of days due to an infection.

But things are going well now - DH still needs blood tests every two weeks which are as stressful as ever. I’m hoping they go down to monthly soon, and then I’ll worry that we don’t know what’s going on !
My eGFR with the one kidney seems to be doing fine. I just need an annual check up now.
It was such a relief that DH didn’t need dialysis; we had had a community nurse round to start discussing options 3 days before we got the call about the match. I could not believe our luck.

@welshmum3 DH also has a leaky heart valve, but we were told that provided something called the ejection fraction was maintained then it wasn’t a problem.

I can’t believe the difference this Christmas will be from last year, and it has all been so unexpected. So a new kidney definitely does happen. I had so many hurdles to get over in order to get approved as a donor. I honestly never thought it would happen, but it did. I feel we have been so,so fortunate.

Just wondering if anyone who is on the list is aware of the weekly report produced by NHSBT statistics which shows the numbers of all transplants done (not just kidneys). The link is below. It’s updated every Friday. I did get a bit obsessed with it at one point, but I’m a numbers person so that’s probably to be expected ! Procedures are up on last year but not quite at the pre covid levels yet.
Transplant stats

Thanks everyone. I have a queue of new kidneys waiting for everyone, a bit like Oprah. You get a kidney, and you get a kidney, everyone gets a kidney!

Im nowhere near needing a kidney, my family think that's how I'll be fixed and don't get it's not as easy as that. And if it ever came to that, they'd likely rescind that offer as they do with every offer of help. It's all lip service.

Don't think I'd be entitled to PIP @queenofwobbles, would be great if I could get some form of benefit so I didn't have to work. Sadly it's not the right climate to give up work. Hoping my work will be lenient, but I knew job was full time and there is no wiggle room for dropping hours.

The whole benefit thing is a bit of a sore point at the minute. BIL's girlfriend gets all disability benefits going, she has a couple of slipped discs and needs a wheelchair and crutch to get around, uses a stair lift and can't do anything that involves bending down. Yet I've never seen her use a wheelchair or crutch, the stair lift has had the same pile of crap on it for months now, and she regularly goes bowling (with us) and rides rollercoasters at the big theme parks every school holiday. Not saying she doesn't have issues, but I think she may have twisted the truth on her forms.

Congratulations on your DH's new kidney @Redbrook, hope you both continue to recover well.

Hope your new GP is more helpful @FuzzyPuffling. Hope you settle into your new house and you get the hot water sorted.

Ah congrats Redbrook, so glad your DH is on the mend and what am amazing thing you did! I’m not sure if you get embarrassed hearing it but I’ll say it anyway 😁
Thanks for that link, I honestly never really think that it will ever be my turn!! But I guess it might be one day, they do seem to to a fair few! I have a fantasy that they will find a live altruistic donor who is a 100% perfect match for me and we will all live happily ever after! And they will end up being my best friend and we’ll go on This Morning etc 🤣🤣
Hope you have a fabulous Christmas!

Hope you settle in ok @FuzzyPuffling and the move doesn’t upset your blood pressure too much! All sounds a bit stressful!

My EGFR has gone down 16 points since February. Still not under 60, but edging ever closer. Had a phone call today to go back in for bloods as my levels for immunosuppressants I take are too high. Hoping they don't make me stop them, as if I can't take them, operating is the only other option, which could result in my kidney being removed. Fun!

I've just been diagnosed with CKD 3, as I'm also diabetic it seems that the two ways to eat are opposed. What I mean is diabetes cut carbs and fill up on fat and meat, kidneys reduce your protein ( the only but of advice I've been given) and I can't do fat as I have a digestive disorder in metabolising fat. I'm feeling guilty as not sticking to my diabetes diet has caused the kidney damage.

I weirdly feel better writing this I know a lot of you are a lot further along in the journey than I am so I hope you have any hints and tips to help me cope with this.

Hello GettingStuffed. Sorry about your kidneys! I'm also CKD3 but my actual eGFR varies up to 13 points. Who knows why? Not me, and the doctors don't seem to care!
I have mine tested twicer a year and sodium/potassium levels are also checked. So far they have remained in range and stable, so I just eat what I like - obviously try to stick to a healthy diet - but nothing special. It must be extremely hard to cope with diabetes too.

Hiya @GettingStuffed - sorry to hear that you feel stuck between a rock and a hard place! Perhaps there is a diabetes thread that could help you with competing dietary requirements - you can't be the first person to have to deal with this dichotomy of diets...

Most of us have only had to contend with renal failure/dialysis diets I believe - does your clinic have a nutritionist you can speak to? I was always getting calls from the one at my hospital to tell me to stop eating so many tomatoes!

Hi @GettingStuffed DH and I both have Type I diabetes (don't ask!) and DH has fairly recently been through peritoneal dialysis and a kidney transplant (mid-October).

FWIW kidney-wise DH was told a normal, or slightly reduced, amount of protein was OK ie don't have extra but having chicken or fish several times a week was fine. He was told to avoid yoghurts, nuts and seeds, beans and pulses, and eggs as much as possible. Diabetes-wise he has carbs at lunchtime but not in the evening and he doesn't eat loads of fat. His weakness is cheese! He eats a lot of fruit and snacks on raw veg. What's your diabetes regime?

If you have any specific questions, please feel free to ask away and I can talk to DH.

Latest update - biopsy of potential tumour came back as nothing sinister 👍
US of blood vessels to create a fistula - veins are too small, can't be done.
Repeat echocardiogram shows some cardiomyopathy, ejection fraction of 40. Not good, borderline heart failure. Need an MRI 🤞it won't stop me getting on a transplant list!

Glad the tumour results are good @welshmum3 . Keeping everything crossed for a good MRI.

Please can I join this thread? After a bad bout of gastroenteritis, my kidney function has dropped. I don't know if the two things are related. My last egfr was 38, now it's 32.
I have another blood test booked for Friday, so just waiting for that.
Anyone else in this position?

I would like to join too. I'm 46 and just been diagnosed with a right side Duplex kidney (this is an extra kidney joined on the right side I understand with a duplex - double - ureter)

I have had symptoms such as pain for years and a weird breathless feeling but other scans over the years have not picked this up-such as CT, ultrasound Xrays etc. It has been found on an MRI for a liver cyst (have that as well but they don't think it is causing the pain)

I have an appointment with Urology on the 24th so only a couple of weeks to go. I'm in quite a bit of pain and taking the 30/100 cocodomols - I'm supposed to have these for adhesions flares (have had a lot of bowel surgery in the past and also have had surgeries for adhesions and small bowel obstruction.

I'm pleased though that it has finally been found- maybe there is something can be done. The MRI is showing a cyst in the lower pole of the kidney where the extra duplex system is also found so wondering if related.

The GP said reflux could be happening in the right kidney due to the extra duplex system and this may be causing the pain but also might be the adhesions joining in.

I've been told by the bowel surgeons I need to avoid any further surgery if at all possible due to having these dense adhesions (internal scar tissue) so I am unsure about any treatment they might be able to offer.

One thing I have seen mentioned is some kind of tube to drain the cyst either by catheter or through the abdomen. Has anyone had this please? Sounds unpleasant.

to everyone with kidney problems some of which sound much more severe than mine.

I have also had episodes of blood in urine when very unwell- sepsis during and after bowel surgery- so wondering if this may have injured the kidneys perhaps. I will try and ask at my appointment. It was never really looked into at the time.

Kidney function tests have come back Ok though which I suppose is good.

Now I have the adhesions pain through the tummy and pelvis and the kidney pain joining in on the right back and side as well. Spending quite a bit of time lying in bed on my left side which seems to help a bit with a hot water bottle on the right side.

Does anyone else find if they massage the affected kidney area that seems to help a little and it gives a kind of gurgling feel ?!

Well, things aren't going great. Just had another 7day hospital admission with pleural effusion / pulmonary oedema.
Still on haemodialysis via central line.
They've increased the amount of fluid they're taking off from 500mls over 4 hours to 2000mls. My BP has never been so low- but probably more within normal range - and I feel rubbish. Right now, I can't imagine myself back at work ever.
Does anyone know where I can get help claiming benefits if I can't do my job? Currently on child tax credits - I have one 17 year old child on high rate PIP but when Turn 2Us works out my monthly benefit entitlement, it' includes her PIP, but this goes into her bank account not mine. Without that, I'd be left with about £600 a month.
I spoke to someone from CAB who mentioned about moving over to UC but she went over it so fast I have no idea if I'd be better off doing it or not.
And last week spoke to someone from kidney care UK, but was feeling rough and now can't remember anything. I could do with sitting down with someone and doing the maths. Any ideas, please?

Hi there @welshmum3

So sorry things are hard right now. I don't have any experience but I have previously done some work with an organisation called DebtFree London who may be able to help.

Or failing that, you can contact Mental Health UK's Money Advice service, who I know are fab with supporting people dealing with on going health issues.

www.mentalhealthandmoneyadvice.org/en/

Hopefully someone there can guide you through.

All the best x

Sorry to hear things are rough @welshmum3 you have had a nightmare by the sounds of things! Has your renal unit got a social/welfare officer? Mine has and they help with benefits etc, might be worth asking? Are you on the transplant list? They might get you done and dusted quickly if dialysis just isn’t working for you so that could be a bonus.

Hope everyone else is ok, been busy busy so apologies for lack of interaction! No sniff of a transplant yet but dialysis still going well 🤞🏼

How did you get on @Orangesandlemons77 ? Kidney pain is awful, itsadaily thing here.

@welshmum3 can you not claim pip for yourself? Ask your renal unit to refer you to their social worker. They'll be able to help.

nothing new to report here, hope everyone is doing ok