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!

Hi I have questions - things just coming to mind now I have the Tenckhoff permanently attached..
Obviously mine is very new, but do you ever forget it's there, just temporarily?
What can't you do now that you did before you had yours? How restrictive is it? Not the dialysis, just having the tube itself.
Thinking about work- (nurse) my line manager is already getting really twitchy about me being on the ward from a patient handling and infection control point of view. I really like my team and don't want to be sidelined behind a desk somewhere. Given that we have minimal actual handling as we have equipment to help with moving patients around and that I'm not going to whip it out in a ward full of patients because it'll be covered - will it still be feasible to continue there?
General household stuff - am I still going to be gardening, organising my she'd, carrying my hoover up and down stairs etc. I'm the only adult in my house and usually think nothing of shifting a wardrobe or paving slabs around.

Hi @welshmum3 DH was told not to do any heavy lifting for a few days after insertion, but now he carries on as normal in terms of house and garden work, does the shopping etc. He also continues to exercise and play sport and says he hardly notices the catheter when doing the latter though he puts extra tape over it to completely immobilise it.

Some people say they are aware of the liquid 'sloshing around' in their bellies – we were warned about this so maybe you have been too? DH says he gets no such sensation, although occasionally he feels a bit bloated and that in turn affects his appetite.

Re. work, I would have thought the decision whether you still feel comfortable in your current role is up to you, I don't see any reason why you should have to be sidelined, though I wouldn't claim to be an expert!!

Ah I felt exactly the same but i promise you, you will get used to it and will hardly notice it. It is just an annoying feature of my body now, like an irritating skin tag or hard skin on your feet. Not ideal but you don’t think about it often!

I still do everything I did before (which admittedly wasn’t lifting paving slabs!!) but lots of walking, running around after the kids, too much housework and lifting shopping etc. Only thing I don’t do is swimming as too much hassle to dress it all for that. I don’t know about the specifics of your work but as long as your cap is on the end. It should be fine although you obviously can’t get the exit site wet so I can sort of see where she is coming from. But maybe a water proof dressing or something would mitigate the risk? I am thinking you must deal with lots of bodily fluids! I do feel a bit vulnerable to it getting grabbed or kicked though, so that’s another thing to consider if you have small kids or aggressive patients!

At least if you are a nurse, learning the PD should be a breeze!! Sending you lots of healing vibes this week, it will get better.

@welshmum3 how are you feeling today? Have they signed you off work for a while? You sound super strong so hopefully a quick recovery 💪🏻 But maybe go easy on the paving slabs

I've been signed off for a month - hopefully enough time for me to get to grips with dialysis.
Can I ask - how long have some of you been on peritoneal dialysis?
My father only survived 18 months on haemodialysis.

DH has been on PD for about 2 months. His hospital is a big supporter of it because they say it is much gentler on the body than haemodialysis so the body can tolerate it for much longer if necessary.
He's on the transplant list but no compatible relatives so it's just a waiting game on that score.

Another question I forgot to ask:
How soon after having the PD catheter in can I drive again?

Hi all, I’m hoping you can give some advice. DH was in hospital all week with a mystery kidney issue.

His blood tests keep coming back with abnormal results. (No idea what the specific test was but the specialist said normal is about 100, kidney failure is 600 and DH’s level was 250-230) He had a CT scan which was clear, 7 bags of IV fluids and a kidney biopsy.

The preliminary biopsy report suggested possibly clots so he had another CT scan but this time with dye. However that came back all clear too.

They've let him come home and expect the full report in about 2 weeks. He’s obviously very tired and sore from the procedure (and the back pain he’s had all along!).

All they told him at discharge was to rest and he’d get an appointment in the post. Is there anything he should/shouldn’t be doing? If he’s comfortable enough, can he drive?

Apologies for the silly questions but it’s been a truly stressful week.

The test will have been creatinine, I'm pretty sure.

That dye is a kidney killer, it was flooding DH's body with it to find his heart problem 7 years ago that finished off his struggling kidneys. Presumably this was an expert renal team?

But to answer your question, yes if he's comfortable enough, he should be able to do whatever he wants.

@thing47 thank you.

He was on the renal ward and saw a specialist there. They seem to have exhausted all avenues and are awaiting the biopsy report.

He’d been prescribed Naproxen and took 1. They seemed really eager to blame that until DH pointed out that he had the back pain before taking it. He was also full up with a cold so they said it could possibly be a virus causing the abnormal results.

Well. Had a bit of a shock today. I was due a long awaited operation next week and had my pre-op last week. Blood tests came back today that showed a significant drop in my kidney function which means my op is cancelled and referred to renal team. I've gone from eGFR 46 to 29 in under a year. No idea why. I'm in absolute shock.

My results are in...eGFR holding steady (good) but protein leakage considerably up ( bad). More tests to follow.

Sorry to hear that @Arsewangry. Has it delayed your op?

@FuzzyPuffling hope your tests come back with nothing too awful.

Hope everyone is doing ok.

The anaesthetic team have flat out refused to do my op they don't operate on people <40 eGFR

Interesting. Was it elective rather than urgent surgery @Arsewangry? DH had a series of heart procedures in 2015 and 2016 and his eGFR then was lower than yours – and way below 40.

I'm sorry to hear that. Rock and hard place.

@thing47 it was actually gastric bypass surgery to help me lose weight to help prolong my kidney function. So I'm in a catch 22.

Oh gosh, how annoying for you. Do they have a Plan B?

29 isn't that low, but obviously the drop over the past year is a bit concerning, I guess they're worried about the function going downhill rapidly, but that isn't inevitable – DH used to have sudden drops followed by long periods (several years) of it plateauing.

No, no plan B as far as I'm aware. I'm just in limbo at the mo until I find out more.

Hi everyone

Welcome to the new dialysis crew, @welshmum3 and others. Hope your journey is smooth.

For the benefit of the newbies, I am wife of a PD patient. He's been back on PD nearly 3 years (had a transplant for 8yrs before that). No end in sight really and it's all feeling like a very long wait at the moment. Our children don't remember a time before dialysis now, sometimes I'm not sure I do!

We do use the flexibility of PD to get away on hols when we can. We're away at centre parks this weekend and heading to canaries at half term. So I know we're lucky on that score.

Is this is a private hospital ? I wonder if they are more worried about lack of emergency care etc Maybe your surgeon would be able to get you in to an NHS environment?

I think it depends on your insurance company. Some have a specific timeline, some just say when you feel up to it, can do an emergency stop etc.

@renallychallenged - no this is university hospitals Birmingham NHS trust.

Ah no @Arsewangry thats a bit of a blow. Hopefully they can instruct you on how to increase it.

I had my covid jab on Wednesday and have spent the last two days feeling like death warmed up, and my kidneys feeling like they're going to explode. Was seriously contemplating going to A+E last night, I was in so much pain. Has eased off this morning. My blood pressure though is sky high, going to give it a few days and if it doesn't go back down, I'll contact my consultant as have had my chemo medication increased.

DH back in hospital with another bout of peritonitis – vomiting, fever and severe abdominal pain on Thursday. Already feeling much better with a broad spectrum antibiotic thank goodness, now just waiting to discover whether its a recurrence of previous bacterium or a new one before they decide on a more targeted antibiotic. Hospital renal ward surprisingly quiet, though, less than half full – this is a well-known hospital in a big city.

I've told him it's overkill as a way of avoiding seeing his in-laws this weekend 😄