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!

As far as I’m aware tomatoes & mushrooms are fine if you’re just trying to reduce phosphate. You will need to restrict them if you need to reduce potassium as well.
We were given quite a good leaflet by the renal dietician which also listed the E numbers which correspond to phosphate/di phosphate/triphosphate found in prepared food. Fruit & veg were not on a restriction at all.
If you google “low phosphate diet” you’ll get quite a few renal service leaflets issued by nhs trusts which should help.

Yes! I have just found one from Cambridge that is helpful. I think to start with last week I did too much googling and bits stuck from the wrong info. I had severe delirium with being ill May/June and I definitely still have some cognitive problems…like counting 15 items 😳. Still hoping that will improve as apparently can take a year, sometimes more. I am so much better than I was. Thank you

Has anyone found any low sodium cheddar? I am not sure it is a U.K. thing?

Hello, hope you don't mind me jumping on but don't seem to be able to get answers to this question anywhere else! Can anyone help with this? Very anxious and not seeing doctor for further info until next week.

I had an ultrasound and these were the results.

Grade 1 increased renal cortical echoes

Right kidney size - 9.9cm
Left kidney size - 9.4cm

Further tests show my egfr is 86 and I do have traces of blood in my urine.

What does grade 1 imply?

I am 41

Thank you!! Xxxx

Hi there,

Sorry you're having medical worries - just to say that no one here is a Doctor, and I've not had experience with renal echoes.

But an eGfr of 86 is high and well within normal range.

Most people on here would kill for an egfr that high!

I hope you get answers soon.

x

Thank so much for your reply. I know no one here is a doctor but I just hoped you might know a little more than me! I will speak to a doctor and find out, just being impatient and worried. But thank you xxx

Please don't think I meant it to sound barbed - I promise I didn't. I meant that, as much as we'd love to give answers, most of us know that numbers and bloodwork can all mean different things in different situations. I myself have learned that the hard way! The renal doctors are the experts - although some are better than others with their bed side manner!

I hope you find relief that, in my experience, an egfr of 86 is normal, and at 41, a healthy result.

The blood in your urine is a marker they need to investigate, but can be caused by many things.

Please don't worry yourself - easier said than done, I know. We'll always be here if you need advice and support in the future!

I didn't think that at all thank you for your kind message me xxxx

Hello could anyone help me understand these results please? I've just spoken to reception at the doctors surgery following my blood test last week. They have said I have a serum creatinine level of 85 and a "glomular rate" of 19? These are in red apparently but the doctor has marked them as "no action." Does anyone have any idea what this could mean, please? Without wanting to be rude it seemed like the person at the surgery I spoke with had even less medical knowledge than I do. The doctor has never spoken to me about kidney disease but clearly something isn't right.

Nevermind- I rang back. It's my serum globulin that is 19. A little low but not that serious hopefully.

Hey, I wonder if anyone could advise. I'm currently 41 years old, and over the past few years my EGFR has gone from normal at 90, to 84, to 76, then back up to 84. I think the reason it was 76 was because I was very dehydrated on the day of that blood test, so I've kind of ignored that reading and assumed that I am around the 86 mark. Doctor told me that based on this, and some protein found in my urine, I have CKD. However, I just had a blood test a week ago and results have just come in - I'm back on 90! What does this mean? I thought damage to kidneys couldn't be reversed, so why have I gone back up to a normal reading? Anyone have any answers I'd be most grateful xxx

Just bumping to see if anyone that can help has missed this 🙏🏻

84 is normal

Your eGFR does go up and down in my experience, my baseline is 64 but I've been down to 53 and up to 77.

Hi there! Your egfr sounds great, and your baseline numbers are wonderfully high and normal.

There are people with CKD who remain at a stable egfr their whole lives. CKD covers a very wide range of conditions, all with varying degrees of severity.

Howver, the protein in your urine can be a marker for CKD. Are you having any further diagnostic tests?

Please take comfort in your currently very enviable (to many people on this thread, anyway!) kidney function. ☺️

Hi everyone! Hope you’re all ok! Sorry I disappeared, lost my log in and couldn’t be arsed to sort it. Still on dialysis, three years on the transplant list now. Not feeling amazing but equally just getting on with life, work, kids, normal every day crap. Dialysis is just part of life now, not sure the call will ever come but might get a surprise one day, you never know!
Probably won’t be around much but really glad the thread is still going and sending love to all my kidney friends. Great to hear of the successful transplants (did I see a half marathon Mike dropped there @ShinyHatStand?? Amazing stuff!)

Merry Christmas to you all (and give me the strength not to eat all the cheese and get told off at January bloods!!)xx

@SandysMam it’s great to hear from you. I’m glad you are well and still managing to juggle work, children etc. I know that to you that you are just getting on with it and what else can you do but you are doing an amazing job. One day when you least expect it you will get that call!

Happy Christmas Eve everyone! I hope you all have some cozy plans for the day. We have friends round for a late lunch, in the hope that the kids will both entertain and wear each other out!

All good, health wise, over here. My brother's kidney (now very much mine) is doing very well, and I still have many moments of quiet gratitude for how life was, and how exceptionally, wonderfully normal life is now. Bar the few clinic visits, but I kinda find those comforting now!

I've not been without small trials, as I have experienced some hair loss again this year, which is now thankfully coming back with the help of a lot of iron pills! Having been through it once before in lockdown, with no help available, I got myself immediately booked into a trichologist this time around - and it wasn't half as stressful. I now look like a bit of fluff ball of flyaway regrowth, but I'll take it!

So lovely to hear from you @SandysMam and pleased to hear that you're keeping on, keeping on. I'm sure that you're fed up of people telling you that they're 'sure the call will be soon!', so I'll just say that I'll be thinking of you and hoping against hope that you get good news in 2024.

Have a brilliant Christmas, to all who celebrate here. Lord knows we deserve it!

xxx

Hello all, and here's to a happy and healthy Christmas to you.

Sadly I have a foul.virus so all plans are off for me. But on the good side, lovely daughter will be delivering plates of Christmas Dinner ( cooked by her DH) to us, so we won't starve!

Happy Christmas! 🎄

Hello Kidney People (and I'm almost smiling that most of my searches for kidney disease took me to The Litter Tray, though poor pets with their stupid kidneys, too).

This seems like a very minor question compared to what many of you are going through, but: having been diagnosed with stage 3 kidney disease today what should I actually have asked my GP? I found myself out the clinic door without really taking everything on board. I could do an e-consult to ask for my readings.

eGFR? Anything else?

Cholesterol and BP were fine. Urine test fine. From what I can see, there's nothing I can actually do to improve kidney function, apart from keeping hydrated?

Any advice is welcome, and all the best.

Hi @largeprintagathachristie sorry to hear about your diagnosis, glad you found this group though and hope reading back through this thread and the first one might be helpful. The most important thing you can do to keep your kidneys healthy is control your blood pressure. Might be worth also looking at limiting protein and eating a plant based diet. Reduce salt massively. Exercise yada yada!
It does depend however what is causing your ckd. Mine just couldn’t be controlled whatever I did (just bad luck) but I hope that living healthily helped slow down the progression to end stage. Arm yourself with as much knowledge as possible, but don’t obsess, depending on your age, lots of people have low function that lasts all of their lives. Wishing you all the best.

Joining this thread. I have an angiomyolipoma in my left kidney. They discovered it during a gallbladder ultrasound as I have stones and was shocked when the radiologist said that the stones are the smallest of my health problems. I had never had any symptoms and had never heard of this type of benign tumor so it was quite terrifying for me. The radiologist's reaction was extreme and he told me I need an annual check up because if it grows and explodes, I can die. Needless to say, I spent a few months worried.
I was lucky and in the next check up the new radiologist explained to me that it is nothing bad but needs to be monitored. If it grows (2 cm now), I will need a surgery.

I have no idea what type of surgery is it, as he didn't think it was necessary to explain and add more concerns but still, I worry. I don't have strong symptoms but I do have frequent urine infections and a burning feeling (apparently it's normal).

Hello @largeprintagathachristie !

I second all of @SandysMam's advice and as she says, kidney function and it's stability is all down to what caused it to go south in the first place. My condition is autoimmune so again, can't do anything about that! Apart from... never get ill ever!?!

I was also diagnosed at Stage 3 and I think there are a lot of people who do stay there. But when you're ready, perhaps take some time to learn more about CKD and its progression if you can. Are you going to be referred to consultant care at a hospital? They will have much more information for you about what to expect and how to take care. It can feel like A LOT but before long, you'll just become a natural expert in renal medicine...

All I can say is that I'm fully on the other side of the kidney transplant coin, and if you do end up here too, it's totally fine.

And this little mumset community will be here if you need to ask us any questions.

Wishing you all the best! x

@SandysMam @MissKittyFantastico84
Thank you so much for your responses. CKD research is now on my to-do list, sigh, and you've given me a great start. All the best.

Hi @largeprintagathachristie I’m just echoing what the others have said in that it depends what the problem is that is causing the CKD. You may be told to limit potassium in your diet and ensuring your blood pressure is under control is very important. Remember that some people stay completely stable at stage 3 and never progress to needing a transplant or dialysis - don’t panic! Kidney Care UK is a great place to research and has a page about Kidney diets too.

i’m sorry @Mandarina4 I know nothing about your issue but hope you get some answers soon.

Hope everyone is doing well.