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!

Oh @Diam0ndsareagirlsbestfriend so sorry to hear this, is he fluid over loaded? Sometimes that can give that bursting feeling. Hang on in there, there is hope things will get better. Today I have done a day at work, picked kids up, housework, after school clubs, dinner, now sitting down doing my evening bag catching up on mumsnet! And I loved every second of it as I’m feeling well. There will be good times again xx

Hope things improve soon @Diam0ndsareagirlsbestfriend He may need to start dialysis as vomiting was what tipped me over into starting. I felt so foul, drained and ill. After a couple of dialysis sessions I stopped vomiting all the time and then after a few weeks my energy levels went back up. Like @SandysMam says, I used to do full work days, days out, weekends away, had much more energy once I was on dialysis.

I know it’s really hard and the psychological adjustment is difficult but there are better days ahead. This is the worst bit!

Any news @Diam0ndsareagirlsbestfriend? Is the pain to do with kidneys or other stuff? Hope things are looking brighter today.

Good morning! @SandysMam @OrganTransplant123 @queenofwobbles I hope today is a good one for you all! Thank you so much for the replies they mean a lot ❤️

He's been discharged from hospital now still in abit of pain but nowhere near as bad as he was, he's exhausted bless him! He did have a scan and they advised they can't see any fluid or anything else that could be causing pressure or pain!
On discharge he's getting further follow up bloods on Friday and then a consultant appointment as they aren't sure if it's been a bacterial infection causing all the pressure/pain! We should find out from this next lot of bloods. He is still sat on around 12% eGFR but sadly I don't think dialysis is too far away. He is worried about going on PD with his stomach pain troubles that's the only thing. He initially had a fistula put in, (surgeons tried twice to repair) which failed! So it may need to be a neck line but that's a whole other kettle of fish! He can definitely identify with the nausea/vomiting a lot of you are feeling, usually cyclizine combats this for him but now yous have mentioned it come to think there has been more episodes of late where the cyclizine hasn't worked and he's felt sick still after taking it, and even vomited once. I really hope when the dialysis comes it works for him after a while like it has done with you, it's heartbreaking seeing the suffering! Kidney disease/failure isn't understood and so underestimated in what it can do to someone! Physically and mentally!

Sending much love to you all

Hello to you all, has anyone got PKD? I've got both polycystic kidney disease and a polycystic liver so look pregnant by the end of the day 🙁. I'm stage 3 and watched my mum go through this to transplant stage after 6 years(!) on dialysis. She was so much better after the transplant in 2014 but died of heart failure last year (again, thanks pkd!) will be following this thread with interest 😊 x

Glad he has been discharged @Diam0ndsareagirlsbestfriend I had a neckline put in as I couldn’t have a fistula. Having it fitted was not fun but I was v underweight and it meant that it was difficult to fit. Other people on the unit said it didn’t hurt at all. It was irritating having to shower around it but never had any trouble with it.

Hi @tiredvommachineasaurus sorry don’t know anything about pkd. Sorry to hear about your mum.

Hopefully things better at home @@Diam0ndsareagirlsbestfriend (at least you dont run the risk of having covid positive patients next to you in your home !). Are they planning to fit a line and start soon?

Hi @tiredvommachineasaurus not got PKD but learnt a bit about it on my kidney travels. So sorry about your mum, it’s just crap isn’t it? Hope you were able to create some happy memories after her transplant but it’s never enough time.
Have they told you about your prognosis?
I sympathise with looking pregnant, I look like that with the dialysis and am very self conscious of it. Always trying to find baggy clothes to cover up! It was easier in the winter with coats and jumpers on!

Anyway, welcome to the thread, we are here to support xx

@tiredvommachineasaurus - my Dh has PKD and is at stage 3 / the pregnancy thing really struck a chord with me / as he is super fit but always has a protruding stomach. He was diagnosed 16 yrs ago , has hundreds of cysts on his kidneys and liver.

He is in 3 monthly checkups at hospital and we tend not to think about it too much

He has a rare blood group as well just to add to things .

Great to find this page for support

Hi @butmumineedit (great user name 😂) welcome! We have a few partners here and it’s been really good for me to see things from that viewpoint. Hope your DH stays at stage 3 and you can continue as you are for as long as possible.

Can I ask…have you had your children tested or have you got a plan for that? My CKD isn’t necessarily hereditary but there is a chance the kids will have it and it makes me feel sick to think about it 🙁

I have abdominal swelling. I thought it would go down with the diuretics but it hasn't - legs and feet are better though. I look about 5 months pregnant.

Hi @tiredvommachineasaurus
I have PKD and, 2 years post transplant, I found a lump below my breastbone which I immediately thought was a tumour. A locum at G.P. was a kidney specialist, so was familiar with PKD and PLD being commonly associated. I'd not been told this, ever, so it was a bit of a shock (although better this than a tumour). I had scans and so far it seems that my liver cysts don't give me the problems that my kidney cysts did. I've been advised that if they get too large and painful, they could be medically burst! Not an issue currently, thank goodness. However, it does seem that if one awful thing is found and dealt with, another thing is ready to take its place - or is that too gloomy?

@sandysman -our children are adopted so don't need to worry on that account luckily

He has also had 2 blood clots in the last 3 yrs, one in his leg and the last one last year in his lungs right near to his heart.

When I say he is fit - I mean his resting heart rate is 48 !! , he had several bouts of kidney stones over the last 25 yrs and it was only when he had a bout of them in 2005 that they decided to investigate further and found that he had PKD.

That's interesting @butmumineedit, DH only discovered he had CKD when he was diagnosed with Type I diabetes. He once asked his renal consultant when it would have been discovered if not for that and received the reply 'probably at the post-mortem!'

It would be fascinating to hear how everyone else found out their kidneys were rubbish…

Mine was really boring! I felt knackered and run down after having kids and so the Doctor ran a blood test. The rest, is history!

I went to book in with the doctor after falling pregnant. Urine test came up with proteinuria, then bloods came back at egfr around 58%.

I honestly felt totally normal at the time, so it came as a BIG shock on top of being pregnant for the first time. Was then diagnosed with IGA from a biopsy, about 5 months post birth.

How I got through it all, I'll never know. Always thought I was a mild, weak little thing - turns out I'm hard as nails mate. xxx 😊

We all are!! I love that 😁🔩🔩🔩🦾

Having avoided Covid completely until now, I have just tested positive.
I took a gamble and went to my sons graduation on Tuesday. I wore a mask ( one of a handful in a building of over 1000 people), but I'm positive this morning.
I should be eligible for antivirals ( eGFR is currently 12 so ckd stage 5).
Does anyone have any experience of how well the system works?
I have registered my positive result and the message said someone should be in contact within 24 hours. But I know the theory isn't always what happens in practise!

Where I live, the system worked very efficiently for DH, a lovely doctor rang within hours and had a detailed chat with him about his options.

On thing to note, though: the anti-virals have not been tested on anybody with stage 5 CKD (understandably, it would be a tricky thing to do, ethically), so they are extrapolating results from people with stage 2 and 3 and applying those to all stages.

DH's consultant (head man at a well known hospital) was of the opinion that he should only have the anti-virals if he was feeling ill enough to be admitted to hospital, or close to that threshold. DH was lucky enough not to feel very ill at all, so didn't have them.

Obviously this is a very personal decision, so if you feel you would benefit from anti-virals it may very well be absolutely fine, I'm merely saying they don't actually know.

Sorry to hear that beginning bridge, hope you feel better soon, remember it is milder now and the vaccine will help protect you xx

@BeginningBridge I'm in the same situation wrt antivirals.
My consultant told me to ring 111, who told me to ring my GP. My GP sent off the form on Friday and I'm due to get them tomorrow morning. Should have happened this morning but the ward was under staffed so they cancelled.
Definitely worth chasing up with your GP directly IMO

I found a letter from my renal unit which said to phone 111. After 55 mins I spoke to someone who will get a medic to call me back.

I thought the dispensing of antivirals was more automatic but will see what happens next.

Sorry to hear you’ve got the dreaded covid too @ShinyHatStand how are you doing with it? Did the drugs arrive today?

did you hear back @BeginningBridge ?

@queenofwobbles after 2 pointless callbacks I finally spoke to a nurse practitioner late last night. She was great said I can see from your record you are eligible for antivirals.

She said she pass the request onto the relevant team who will be in touch.
Not heard anything else ....

I went in to my local hospital this morning for intravenous antibody infusion. Apparently the oral meds are not compatible with my anti rejection meds

So for me it was 2.5 days between positive test and treatment

Feeling ok-ish