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!

Yes, took a few weeks though. Hopefully I won't get it again any time soon.

Hi All. How you all doing?
I had a crappy week where I was feeling really grim and it took me right back to pre-transplant times. I even asked for some extra bloods as I was feeling just like I did when my kidney function was at its worst. The bloods were all fine but it was an unwelcome reminder of how even though I'm mostly really well I'll always just be one crappy blood test away from being properly ill again.
Since then I've bounced back ok but REALLY need a holiday.

Hope you're all well. X

Hi Shiny, I wonder what caused that then? Been eating oysters or something 🤢??
So glad everything was ok. It’s almost a PTSD type of thing isn’t it? One small thing and you’re right back there. If I have a rough day I convince myself the dialysis isn’t working and get in such a state, but I think as a human you just feel rough sometimes but so hard for kidney people to just say “oh it’s nothing, I’ll be on tomorrow”. We’re not normal 🤪
I’m doing really good though thank you, went on holiday a few weeks ago, only to Weymouth but it was really lovely to get away and so easy to get the dialysis stuff delivered etc. Never ever thought it would be possible.

Great to hear that the holiday went well @SandysMam
We go away in a few days. Can't wait.
I suspect I just pushed too hard post covid and my body just needed more recovery time.

Well, the verdict is in IGA nephropathy. Will need dialysis and a transplant before long. Consultant is getting the dialysis team to call me.

I'm having a varied week. Worst thing is I broke a bone in my foot ( a plank fell on it from a height) and it flipping hurts. Very hard to walk and it's so frustrating not being able to do very much.

Takes my mind off other ailments though!

Hi Shiny hope you are doing better now. Totally relate to that being one blood test away feeling! Take it easy after covid!!

Sorry to hear that @welshmum3 how are you doing?

Hi @welshmum3. Really sorry about this.
Let us know if you have questions about the path ahead. Or just come on here and moan, rant or rage as needed.

I don't know if it helps, but for me the point that you're at now was the hardest from a psychological point of view. So much uncertainty with no clear answers. It's really really tough. But I think for many of us it does get mentally easier as the path ahead starts to become clearer.

@ShinyHatStand Thanks. My father was a dialysis patient, so I know a little of what to expect.
I'm hoping I'll have the option of peritoneal dialysis as I need to work (single parent with a mortgage) and one of my offspring has additional needs. She's away during term time at a special school four hours away and I need to go up there frequently for meetings etc.

Fuzzy I missed your post - OUCH!!! hope you get better soon

Thank you queen. A week on, I am very fed up with being in pain. And of course, I can't take ibuprofen...because of my kidneys!

How feasible is it to juggle work and dialysis?

I’m planning on home dialysis so I can carry on working. I don’t know how I could afford not to the way things are going! Although I worry for the electricity bill of the dialysis machine! My hospital have no concerns about me working and have been really supportive. If you look back on the thread a few people have talked about work and being on dialysis so it is possible!

DH has just started home dialysis @queenofwobbles, and is working this afternoon. He runs out of energy quicker than before dialysis so wouldn't try to work 7-8 hours, but can do, say, 4 just fine.

FYI we've been told the electricity costs of a home dialysis machine are refunded.

Hi @thing47 sorry to hear the dialysis finally caught up with him I hope it all goes well. Did he go for the overnight option or is he doing manual changes during the day? The hardest thing for me is the not really knowing how it will be on dialysis. Appreciate it’s probably tough and the majority are probably not out there running marathons! Is he feeling better for it?

Hi sorry to jump on, haven't been here for a while but was early poster.

Those talking about home dialysis do you mean peritoneal or home haemo?

Dh is currently on in centre dialysis after a failed transplant. They had wanted him to do home haemo but he's not keen, especially as they're hoping to transplant him again after sorting some medical issues.

Also I think people are entitled to help with energy costs of home dialysis?

Dh did home overnight peritoneal for 7 years before transplant but docs say haemo the option now.

DH is doing peritoneal, overnight. Too early to say if it's making a difference – he wasn't feeling too bad, still playing serious sport with an eGFR of 5, but it suddenly hit him. It's all been highly efficiently organised. Machine is a little bit bright at night, but not too noisy, though I confess I have decamped to the spare room.

Home haemo sounds tough, I think, has anyone here tried it?

Hi @tobee Im starting on PD and plan to move to home HD eventually when it fails (and hoping for transplant), so I’m not much help I’m afraid! I talked a lot about both options with my hospital because I couldn’t decide! If the PD tube freaks me out too much or I can’t cope with hooking up to the machine every day they said I can switch. It takes 3 months to train for home HD at my unit. If it’s going well in centre maybe he doesn’t want to rock the boat?

@thing47 I’m seriously worried about the noise! But let’s face it there’s not many options. Can you throw something over it to stop the lights?

the amazing Organtransplant123 posted on here about home HD - on the old thread.

Overnight peritoneal machine was not very noisy. In fact I quite missed the noise after!

Dh was scrupulous about hygiene and never had an infection in those 7 years. You really can live a pretty normal life, go on holiday with the machine and either take boxes of fluid with you or get it delivered while away. There is quite a lot of storage of boxes and the rest of the paraphernalia. Also, it was possible for him to do the manual bags occasionally for a short period. The only real restriction is having to stay in bed for the required hours. It's very gentle and good to dialyse so frequently. And there aren't really restrictions on fluid intake.

The hospital want Dh to do home haemo as he's a suitable candidate. But he's worried about something going wrong with the needles/fistula. Also I think it takes about 9 months for him to be trained. Training for peritoneal was much shorter.

Early days here but would echo everything @tobee says. DH has no fluid restrictions at the moment and can use bags with very low glucose content (which is good as he's Type I). He had 2.5 days' training.

Thanks @tobee it’s good to hear someone else’s experience especially that it was positive and no infections - you make it sound less traumatic than I am imagining! We have no space so are getting a shed!

At my hospital I think they encourage home haemo for anyone eligible - probably to save NHS money! 9 months is a long time to train though. Is he working at the moment and would it improve your lives? I won’t lie the thought of doing the needles is a bit scary!

Glad it’s gone smoothly @thing47. Did he get signed off work for the training - does it count as sick leave? Find it quite stressful at work knowing something is going to happen but not knowing how long I’ll need off or if it will be sick leave - my HR are not great!

I'm sorry I'm afraid I can't help on that score as DH is self-employed and works from home so is in the fortunate position of being able to adapt his workload around how he is feeling. He does have deadlines, but there is usually enough flexibility in them to allow for having a particularly bad day.

I'm sure someone else will be along to help soon, though. There must be laws applying to this situation, surely?

Ah no worries. They mentioned a couple of weeks recovery from the tube insertion and then training time. Guess I have to play it by ear and if I need time off I need time off! It’s a bit of a treck to the training place for me but it’s only for a couple of days I think. I think they said you can stay overnight there too which I really don’t want to do - did your DH have to do that?