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!

Obvs sad about the Queen etc etc before anyone thinks I am heartless with last comment though 😬🫣

It all sounds a bit like Goldilocks – you don't want a fast drain and you don't want a slow drain. It has to be just right!

DH's PD team are pretty realistic and have said all along that PD isn't for everyone. The head of renal isn't actually a fan and he's DH's personal consultant so maybe that encourages them to be a bit more honest. Anyway he's probably going to try manual draining and see how that feels and works.

Hi chaps! Very specific question for the transplantees...

If you had a child who was due the nasal flu vaccine, did your doctors:

a) say they should get it
b) advise that you should isolate from them afterwards - and for how long?

Many thanks!

x

Not a transplantee but been wondering about this myself In case I get the call! I think you are meant to avoid close contact with live vaccines for 2 weeks (but I think it’s a small risk so not to worry anyone who did go with nasal spray). Ours asks if anyone in the family is immune suppressed and they give the injection instead.

Well, things have moved pretty fast for me in the last couple of days. eGFR dropped to 6 and Hb 81. Had an iron transfusion today, more bloods taken and booked in on Tuesday to have a PD catheter. 😬

Hope you're feeling OK @welshmum3 , DH started to feel not so great when his eGFR dropped from 6 to 5, so good idea to get you set up, I think. How did you find the iron infusion? DH had an express one in hospital once which he said was deeply unpleasant but has since had 2 more done in normal time which were absolutely fine.

Wow @welshmum3 it’s been quick but some positives at least you’ll feel better for it (hopefully) and it’s kind of like whipping the plaster off and getting on with it oppose to spending years in limbo knowing it’s coming. Are you going for over night or manual changes? I’m always on the cadge for extra iron 😂

@thing47 the iron infusion was ok, they did it fairly slowly as I'd never had one before, over about an hour and a half.
Just as well really I guess as the bloods they took immediately before showed my Hb had dropped to 76.
@queenofwobbles I have to do manual exchanges at first but can then move over to overnight, which will be better for me.
I'm getting a quick overnight visit in to my daughter tomorrow as I don't know when I'll get chance to see her next (she's at a special school 200 miles away). 🤞for Tuesday

Aww @welshmum3 that has moved fast and can be a huge shock but I promise you can do this.
The first week won’t be great, you will feel sore (so stock up on paracetamol and rest lots to aid healing) and you will feel like GET THIS FUCKING THING OFF ME!!! But I swing mine around like a lasoo now and hardly notice it when out and about (although had to alter some clothes etc). Not gonna lie, the first month is the hardest but once you get the dialysis in you, you will start to feel better. Let us know how it all goes if you can.
P.S when they say stay at home the day you take the pre-op laxative, for the love of God stay at home!!!

@MissKittyFantastico84 oooh not sure about the flu thing but interesting for the future. Your pharmacist would probably be the best person to ask as they really know this stuff, sometimes so much more than the doc I find.

Dreading new bug season, it was constant germs last winter, if anyone has any tips for avoiding with small kids that would be great!

Sorry if I repeat myself in my posts and say the same stuff every time! I am nowt if not consistent 😁

Also @welshmum3 please tell me they have given you Epo injections?? If not you will never get your HB up with iron alone so you need to insist if not, it will make the most difference.

@SandysMam yes, had one Epo injection on Friday after the infusion and now have a stock in my fridge 😁

@welshmum3 that sounds hard but I am sure you will be back to normal before you know it and able to visit. I have probably done my hospitals heads in with all my worrying and questions - literally years of worrying - and they always make it sound so easy - even the manual changes! At my hospital you can go straight onto a machine but one nurse told me lots start off with manual to make sure it works. I don’t know how I’d fit it all in though long term! Good luck for Tuesday if you can let us know how it goes that would be fab

@SandysMam i have no idea and it must be tough when your run down on dialysis or if you get a transplant with these germy littlies around! Things seemed better in covid times for us so I try and keep hand sanitiser on stand by. Went the Drs last week and not a single person had a mask (I felt like a right weirdo in one too!), not even the Dr I saw and the waiting room was crammed with people coughing all over it so i don’t have much hope for bug season 😬

P.S when they say stay at home the day you take the pre-op laxative, for the love of God stay at home!!!

Absolutely do this as @SandysMam says. And don't plan to get anything done either.

DH took EPO for a while, then stopped as his levels had recovered, about to re-start. He's had Type I diabetes for 30 years though so not bothered by needles luckily. He did say he was disappointed not to see a huge improvement in his athletic performances, however, a la Lance Armstrong… 😂

DH doing manual currently after issues with the machine. It's not too bad, he's got each exchange down to around half an hour. But he works from home and our DCs are grown up so it's do-able, it would be hard for someone working full-time out of the home or raising a young family, I would imagine, in practical terms.

Hello all,

@MissKittyFantastico84 I always just let mine have the nasal. Both my dcs end up having it over a month after I have my flu vaccine so I feel covered. Neither would have been impressed with having an injection so I felt it was the best overall. I’d be interested to know what a dr or pharmacist would advise though!

@welshmum3 you will feel better once your iron goes up. I love iron infusions- obviously you don’t come out cartwheeling but they definitely improve fatigue gradually. Did you get epo at the same time?

@queenofwobbles The lack of masks in a medical setting is odd! People at my Gps are coughing and spluttering all over the place. I’ve a hospital appointment next week and I’m wondering if they’re still using them.

I start a new job soon. It’s remote but full time so I’m a bit daunted. I’m used to a nice mid week day off!!

Hi @OrganTransplant123 it felt really odd! I know most of Mumsnet will come along and say masks don’t work but surely they help contain the viral load a bit and it’s better than being spluttered all over! My hospital still has masks at the entrance and the majority of people wear them. All staff masked.

Congratulations on the new job! Did you tell them about the transplant? I spend my time worrying how I’ll ever get another job with all this hanging over me. Would love a fully remote job! Sounds fab!

Thanks @queenofwobbles I mentioned my transplant in my covering letter! I needed to explain a gap in my CV so thought it best to be up front and phrase it as a positive- new energy and enthusiasm to tackle a new challenge etc.

There seem to be more remote roles out there. Councils and charities both seem to have embraced home working. It is v sector dependant.

Hello all. Good to read your news.

Re masks, I have a mammogram (in a mobile unit, aka a van) this week and am told I have to wear a mask. (I would anyway. I'm still wearing one in LIdl!)

DD2 (who lives with us) has a first class Masters in control of infectious diseases so we reckon we're pretty up on the advantages and disadvantages of masks, was quite surprised to see no one wearing masks at the GPs when I went for my flu jab last week. Where DH goes for renal care everyone is most definitely still in masks, staff and patients, and there are big notices up at every entrance etc. It's definitely compulsory.

@OrganTransplant123 very brave! I remember you talking about job hunting on dialysis so am glad it’s worked out in the end. Let us know how your week goes. Hoping for some of this new found energy and enthusiasm 😂

Ahhh fuzzy if I see a masked person in Lidl I’ll know it’s you 😂

@welshmum3 hope yesterday went ok and you are feeling alright this morning xx

Congrats on the job @OrganTransplant123 fully remote is the dream!!

Got my 6 monthly kidney function tests booked in for Thursday.

I'm also in the process of selling my house and buying another one and it's very stressful. Trying to keep zen!

Hi everyone 👋. All went well yesterday. Now for the next stage...

Good luck today @welshmum3!! Report back when you can. Deep breath and I’m sure it will all be fine!