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Crappy kidneys thread 2

423 replies

SandysMam · 07/06/2022 20:37

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!

OP posts:
FuzzyPuffling · 09/10/2022 07:56

thing47 oh your poor DP. And poor you too..being the constant carer is exhausting for different reasons. I do hope things improve soon and the hospital sort him out pronto.

AdditionalCharacter that sounds horrible. I havey covid booster and flu jab together next Saturday and am not looking forward to the gall out. ( I normally over-react to jabs as it sends my lupus bonkers). Hope you feel better soon.

My test results are back...eGFR holding up, but protein detected so I've had to repeat the test. I do wonder if it can be stress related ( raising bp?) as I'm in the process of trying to move house and have been enormously anxious for several months.

AdditionalCharacter · 09/10/2022 15:19

Sorry to hear about DP @thing47. Hope is is well soon.

I had both @FuzzyPuffling, normally fine with flu jab, so definitely think it was the covid booster. House moves are stressful, hope it's just that causing high BP

thing47 · 10/10/2022 23:41

Thanks @FuzzyPuffling and @AdditionalCharacter. To be fair to DH I don't really have any caring responsibilities as such – I have zero input into either his dialysis or his renal and diabetes management, he does all of it entirely by himself (in conjunction with his medical teams, of course). It's more just the worry, dialysis really isn't working for him, he is more ill now than before he started it plus he is getting repeated infections, which of course result in him being suspended from the transplant list too. Sorry to sound negative, wouldn't want to put people off dialysis but our experience so far has not been terribly positive.

I don't think there's any doubt that a house move is stressful and could definitely lead to high BPs!

Lolacat1234 · 27/10/2022 11:53

Hey guys, I'm back :( I very naively thought once I had my pyeloplasty that would be the end of my problems but I just had my latest round of bloods and it appears my gfr is still falling, it's 64 now. It was 72 pre pyloplasty. Other thing I noticed on my bloods was my TSH level creeping up. I've been feeling pretty shitty the last month or so, exhausted, low mood, can't shift the extra stone I put on whilst I was recovering from my op despite a good diet and exercise regime and sorry about TMI but my libido has packed up and left which is causing problems in my relationship. I guess my question is do any of you have trouble with thyroid as well? TSH is not massively high, it's 4.15 which is basically on the cut off for normal, but I've read loads about optimal levels being under 2.5 and anything over 4 being subclinical hypothyroidism as well as studies that link a higher TSH with a negative impact on gfr. I see my consultant next week so will raise this with him but he's a urologist not a thyroid specialist. Anyone here with thyroid problems as well?xx

BeginningBridge · 27/10/2022 18:02

I had undiagnosed hyperparathyroidism for many years which led to the deterioration in my kidney function. My egfr is currently 9 so while I am dodging dialysis at the moment I am sure it won't be long (and if it gives me more energy it will be worth the upheaval).
More positives for dialysis would be appreciated! It seems very scary. I have a preference for pd. Can anyone who started on manuals tell me how many exchanges they had to do at the beginning each day?

Lolacat1234 · 27/10/2022 22:00

Sorry to hear you are having to consider dialysis, I should count my lucky stars really as 64 isn't so bad really. I think it's just the rate at which it is declining is worrying me especially after my operation which was supposedly to fix the problem! I am definitely going to push for some investigation into subclinical hypothyroid issues as it seems to explain a lot of the symptoms I've been having. I'm sorry I'm not more knowledgeable on the other things you mention xx

thing47 · 28/10/2022 11:50

BeginningBridge · 27/10/2022 18:02

I had undiagnosed hyperparathyroidism for many years which led to the deterioration in my kidney function. My egfr is currently 9 so while I am dodging dialysis at the moment I am sure it won't be long (and if it gives me more energy it will be worth the upheaval).
More positives for dialysis would be appreciated! It seems very scary. I have a preference for pd. Can anyone who started on manuals tell me how many exchanges they had to do at the beginning each day?

@BeginningBridge my DH's eGFR took over a year to drop from 9 to 4, which is when he started dialysis, though I think everyone is different in terms of their levels when they start so best be prepared.

He did manual PD at home for a couple of months during which time his creatinine levels dropped from 1100 to 700 – still high but a marked improvement.

He did 4 exchanges a day and found the process relatively straightforward, each exchange took about 40 minutes including set-up, drain and fill. The main restriction I guess is a lifestyle one – doing exchanges at lunchtime and teatime does somewhat limit the amount you can get out and work out of the house/eat out/socialise etc. But he says not to be scared of the process, you can lie down or sit according to preference, it becomes routine and you can just watch telly, or read or whatever you enjoy doing while the PD does its thing.

The firm that supplied all his fluids and drains and everything were wonderfully efficient, very friendly and helpful and took all the stress out of ensuring he had what he needed. Although you do need a fair amount of storage space for it all!

MissKittyFantastico84 · 29/10/2022 21:58

@Lolacat1234 My nephrologists are happy with an eGfr that hovers within a ten point range - which yours is. Your doctors might have told you differently, but perhaps it's not as bad as you think?

Not a Doctor, but that has been my experience.

Lolacat1234 · 30/10/2022 06:50

Thanks miss kitty I hope it's not a worry for my urologist, I'll see him in November and ask. I think I'm just a bit disappointed it has continued to decline even after my operation to fix the problem with my right kidney. I assumed it would improve or at least stay stable, and then the other thing is how much further will it decline until it stabilises? I'm hoping it was just a bad day!x

MissKittyFantastico84 · 30/10/2022 07:51

Post transplant, my egfr has varied by anything as high as 8 points, and that's normal! My last check it had come up 8 points from the time previously. I made sure I was properly hydrated this time! So many things can affect creatinine - mainly hydration, but also physical movement/exercise. There is a chance it has declined, and it may not come back up, but it might also be OK and I just wanted to offer the information I have in my wheelhouse, in case it helped.

Hope you get answers soon. x

Lolacat1234 · 04/11/2022 09:00

Also random question for all - is night sweats a common symptom of kidney disease? Just trying to understand a bit more about my situation, I had terrible night sweats before my op and now they're back again 5 months later. A lot of what I read said not a common symptom but I have found speaking to actual people with the disease is more helpful than dr google xx

Lolacat1234 · 04/11/2022 09:01

Also thank you miss kitty for your kind words, my gut feeling is that something is wrong as I'm feeling really shitty at the moment but will find out for sure on Tuesday. Worst case scenario is they say my right kidney might as well come out but I'm trying not to go there x

BeginningBridge · 07/11/2022 19:59

Lolacat1234 · 04/11/2022 09:00

Also random question for all - is night sweats a common symptom of kidney disease? Just trying to understand a bit more about my situation, I had terrible night sweats before my op and now they're back again 5 months later. A lot of what I read said not a common symptom but I have found speaking to actual people with the disease is more helpful than dr google xx

To be honest, I suffer from feeling cold all the time. A mix of thermal vests and cardigans keep me just about warm enough during the day (I am looking like a granny) and my best recent purchase has been a heated mattress protector to keep me warm at night.
Once I get cold it takes me ages to warm up again.

OrganTransplant123 · 08/11/2022 11:02

I’m not surprised you are cold with a egfr of 9 @BeginningBridge Have you been having regular epo injections? Anaemia makes it worse. When I started dialysis I got a heated blanket, I recommend it. Here I am post transplant with it on my knee as I work.

Everyone starts dialysis with a different eGFR- mine was 10 when I started so don’t feel you need it to drop to a certain level.

@Lolacat1234 hope you get good news at your appointment. Your egfr may be dropping but it’s still a good level.

How is everyone else? It’s almost my first anniversary of my transplant. Mixed feelings as you can imagine. It’s given me a new lease of life but a family somewhere had a dreadful loss and made the decision to donate.

SandysMam · 08/11/2022 11:30

Wow @OrganTransplant123 how is that a year already?! Gone really quickly.
I think the fact that you have had a new lease of life will bring comfort to the loved ones…I have lost people who’ve not been able to donate and that thought would absolutely bring a glimmer of happiness in dark times. Can you send a card via the transplant team?
I’m still chugging along! Dialysis still going well touch wood and is part of day to day life now, it is what it is and feel super grateful to it. Definitely recommend the Epo @BeginningBridge when my anaemia is uncontrolled it makes me feel worse than anything. My Heamoglobin is consistently good with the injections and I feel so much better for it.
Sorry I’ve not been around much, just getting on with life in a way I never thought would be possible when I started the thread.

OP posts:
OrganTransplant123 · 08/11/2022 13:28

Hi @SandysMam so happy that you are well and dialysis is fitting into your busy life!

I don’t know where the time has gone. I do want to send a card, I’ll contact the coordinator and see what the protocol is. Hopefully they’ll be able to guide me.

BeginningBridge · 08/11/2022 13:35

Just received my latest blood test result and my eGFR has gone back to 11 ( the dip was caused by low blood pressure) so it looks as if I have a slight reprieve before starting dialysis.

BeginningBridge · 08/11/2022 13:36

And no EPO injections for me yet. I've had an iron infusion but nothing else. Will ask again at my next hospital appointment.

Lolacat1234 · 08/11/2022 14:01

Thank you all - good news at my appointment today. My right kidney functioning at 27% now after my pyeloplasty, it was 18% when it was blocked. My urologist checking bloods again in a month or so as gfr lower than pre op, but he said as I'm sure you are all aware of it can be affected by many things as it's still a good number. I guess my worry is that it's on a downward trajectory, I'm only 35 and I want both kidneys functioning for as long as possible!x

thing47 · 08/11/2022 14:07

@Lolacat1234 when DH was diagnosed with kidney disease in his mid-20s he was told he'd need dialysis/transplant within 15 years. It took 31. He had several longish periods when his eGFR plateaued, so while we're all on a downward trajectory, sometimes that trajectory might not be as steep as at others 😀

thing47 · 08/11/2022 14:09

Has anyone else had friends or family members ask 'which kidney doesn't work'? And then being totally perplexed when you reply 'well neither, obviously, as you can live quite happily with one'. I know some people aren't medically minded, but this is just common sense surely? Not rocket science.

SandysMam · 08/11/2022 14:13

Haha @thing47 i get that all the time! Also amazing how many don’t actually know what the kidneys do! I also hate it when people insinuate it is alcohol related, as if I somehow brought it on myself (I have never really drunk). I find that really hurtful.

OP posts:
thing47 · 08/11/2022 14:19

SandysMam · 08/11/2022 14:13

Haha @thing47 i get that all the time! Also amazing how many don’t actually know what the kidneys do! I also hate it when people insinuate it is alcohol related, as if I somehow brought it on myself (I have never really drunk). I find that really hurtful.

We've not had the alcohol comment – that's the liver surely not the kidneys?

DH also doesn't really drink, perhaps you and he should respond with 'oh you mean I should have drunk MORE alcohol? Yes you might well be right…'

DH also has T1 diabetes (not the cause of the kidney disease but definitely hasn't helped) and still gets the 'oh did you eat too much sugar as a child?' DH is very laid back so the most he does is roll his eyes, but I sometimes find it very hard to stay silent at this one.

SandysMam · 08/11/2022 14:20

Great news on the improved blood results…just try to live in the moment. Today you are ok, that’s all that any of us can have so let the future take care of itself and deal with today.

OP posts:
MissKittyFantastico84 · 08/11/2022 17:06

Another cracker is that people think they also remove your own kidneys when you get a transplant. I guess the logic fits - but yeah, they did two completely pointless operations just because why not.

Ppl are often surprised to find out my new kidney is in my groin!

: )

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