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!

I saw the Urologist who told me the duplex is a 'partial duplex' and it looks ok eg. no swelling in the tubes etc, referred me back to the GPs.

It does have a cyst there however but he thought that was ok / normal.

Then I had a rash etc and have been diagnosed with Shingles. Which apparently can sometimes behave like kidney pain as in the same sort of area.

So an odd story for me but at least I am being treated now with some antivirals.

I have ckd4 and clinical depression along with insomnia. The shock of being told I had ckd4 put me in hospital for six months. I have to take a shed load of medication Trazodone Quietipine Mirtazepine and diazepam this is to help with the depression. I know its not good but I have no other choice.This has being going on for nine months now - I don't go out and every time I do its for a hospital appointment.The insomnia is the worst I get maybe two hours a night. I feel dead inside now. My family can't get to grips with it. The biggest shock I had was when my son said he was being posted to Gibraltar for 3 years - I am heartbroken.He doesn't. deal with it very well and when I made a joke about me going in his suitcase he said 'and have you being miserable all the time not likely' that was such a cruel thing to say to me - I adore him.He has a fantastic life in front of him now and I just hate being in the uk now. I suppose I am a little envious. As I can't sleep I can't see me going over there to see him - I don't think he would want it any - he wants my husband but not me. I just get the feeling when he is over there something will happen and he may not be able to get back in time. I am 73 years old so I suppose I am not in line for a transplant because of my age.My gfr runs at about 18 but I am concerned about my potassium level which is now at 5.1. I had a wonderful job which I have had to leave - all my plans have turned to dust.Kidney disease is so underrated.

Is 73 too old to be considered for a transplant. Also because of all the meds I have to take I suffer with constipation - is it all right to use a suppository every day. I am ckd4 gfr 19 - thanks

I don't think 73 is too old - but it all depends on your general health. I am in my early 60s but couldn't be considered for a transplant last year because I was so overweight. I eventually decided to have weight loss surgery which was 8 months ago. I have now reached my target weight and am waiting for an appointment for pre transplant tests.

Hi all

How are we doing?
I was just reading the ridiculous uterus donation scaremongering thread and was reminded of this one @ShinyHatStand

News from here is that DH had a transplant 2 weeks ago. After 4 years on "the list" and 3.5 on dialysis it was a big shock to finally get the call. Recovery is slow and bad timing with schoool hols but hopefully worth it in the long run.

How is everyone else?

Exciting times @renallychallenged !
I hope his recovery continues on track.
My memories of those early days are a mixture of frequent crying at random times and happy, slow walks in the sunshine.

I'm now nearly 3 years post transplant. Still really well. Recently did my first half marathon #ShamlessBoast

Congratulations to your husband @renallychallenged !! That's so amazing 🤩 wishing you all the best for a steady egfr and smooth recovery xxx It's going to change his life, but you know that already!

I also saw and commented on that insane thread. There was some bollocks about babies in utero being exposed to dreadful immunosuppressants and getting horrendous defects. Obviously MMF can cause that, but no medical practitioner on earth would keep you on it while you wanted to have a baby. A few people were also dramatically stating that they had removed their names from the donor list, which made me feel quite angry. Hope they never need a life-saving gift from someone else!!

As for me, I'm coming up to 18 months post transplant and I'm doing fab. Life is normal and it's just wonderful to have energy and feel like myself. They've been keeping an eye on my EBV level which hasn't really ever fully gone away, but it's not bothering me right now.

Hope you're all well xx

Hello everyone!

Wonderful news @renallychallenged 2 weeks is nothing at all. Everything is so emotional and physically challenging at that stage. It’s such a big adjustment.

I saw that thread too. It’s very easy to piously say you’ve removed yourself from the list and would never accept an organ when you don’t need one!

How are you @SandysMam ?

I’m doing very well. My bloods seem to improve slightly with each check up so long may that continue!

Great news that everyone's transplants are doing well.

Clinic today & eGFR up to 34%. It's going up every day so hopefully will get a bit higher. DH is definitely feeling more human over the last few days.

Hi everyone, glad everyone is doing ok.

I had some good news at my last 3 monthly review following my MRI, finally some reduction in tumour size. Thrilled but struggling a bit to actually believe it after years of hearing they've grown over and over again.

Hello I hope you don't mind me popping into this thread, I know my situation is nowhere near as severe as those described on here but hoped to ask for some advice please.

The nurse at my GP surgery showed me the results of my blood tests I had in July and my creatinine result was in red and very high - 93 which I believe translates to an eGFR of 55. The nurse downplayed it completely saying it can fluctuate for lots of reasons and maybe I was dehydrated or something. But I drink loads of water and go to the toilet constantly so I don't think it can be that.

The nurse also mentioned I'd had a series of high creatinine results previously but they'd gone back down over subsequent tests, but now we're higher than ever. I have high blood pressure and take medication for that. I had a sever case of hyperparathyroidism 25 years ago and was hospitalised for 2 weeks to stabilise me and then have three parathyroids out - no idea if its related. But the nurse hasn't referred me to the GP, not offered a dip test, nothing. Just my regular retest next year.

So my plan is to cut way down on salt, keep exercising and taking my blood pressure medication, eat mostly veggie, and pay for a blood test privately in another month or two. Anything else you think I should do please? Thank you.

I'm in a similar position. Do you take blood pressure medication? The ones I was on affected my kidneys really badly. From normal kidney function, within 2 years I had Chronic Kidney Disease Stage 3.

My meds are changed and things have improved to Stage 2.

I had to pay to see a renal consultant as my GP wouldn't refer me.

Re Salt. Yes - try to take in as little as possible. Use spices, herbs and garlic. Give up sausages, bacon, crisps, smoked fish etc.

☘️

That’s great news @AdditionalCharacter things are going in the right direction for you!

@Meadowdog I’d have expected your GP to do a repeat test to check it again rather than wait a year especially as you are on blood pressure meds. Are you testing your blood pressure regularly at home?

Thank you @LesLavandes yes I take perindopril for my high blood pressure. Which was the bad one you were on and which did you switch to, please? I also have to take omeprazole every morning as I have Barretts Oesophagus, and I've read the omeprazole may not be doing my kidneys any favours, either. I think I'll probably end up seeing a renal consultant privately also.

Thank you @OrganTransplant123 . Yes I do take my blood pressure at home and it's fine with the meds. I would have expected to be offered a retest also but they just didn't seem like they wanted to be bothered. I could try insisting I suppose if it would be worthwhile. But I'm also OK to go private if I need to - obviously I'd rather not though.

Hi. I was on Olmesartan and my specialist told my go to do 6 monthly blood tests re kidneys. The completely failed me.
I am now on Amlodopine 5 mg and changed my gp.

Meadowdog, I see my kidney consultant privately.
To be honest I ( sadly) think it has been crucial in keeping me relatively stable over the last 5 years.
I see the same person so he knows me well
now. When my blood test result dipped dramatically he phoned me at home with clear instructions on what to do.
My GP surgery still do the blood tests for me ( otherwise the cost would be unaffordable).
Someone I know attends the local nhs clinic. They usually see a member of the consultants team who hasn't had time to read their notes. A different person every time so no consistency.

Thank you so much @LesLavandes and @dinghymum . Good point about getting consistent care from one consultant by going private, I hadn't thought about that.

Thank you so much @LesLavandes and @dinghymum . Good point about getting consistent care from one consultant by going private, I hadn't thought about that.

I had covid in late April, by the beginning of May I had lost the plot completely and my (adult) sons called 999 to get me admitted. Urosepsis and ureamic delirium got me admitted to ITU. Acute kidney injury so dialysis. Improved over a couple of weeks and discharged. eGFR had dipped to 5, on discharge around 25-28.

I was waiting for major spinal surgery (fusion T9 to sacrum) due to spinal stenosis. I have had two lots of spinal surgery and the approach for this has to be through my stomach with a significant risk of AKI. Baseline eGFR settled now at 27-33, now considered chronic renal failure. Having been waiting a while it was adding insult to injury to learn I had been listed for June which obviously could not happen. The spinal surgeon and renal chap both very anti surgery.

Background of long term NSAIDs and hypertension (not very well controlled) thought to have added to result in the AKI due to urosepsis. I was itchy and tired before all this which I put down to pain and opiates but I do wonder if CKD had been brewing for a while. No bloods since 2018. Taking 10mg Amlodipine and 16mg doxazosin now and about to start Lorsartin. BP 160-190/130-110 roughly. Was higher at renal appt earlier this week obviously!

Seriously considering risking the surgery and following dialysis as mobility very poor and pain control terrible (most drugs stopped due to kidneys). Advice from renal chap, reduce sodium and phosphorus (don’t worry about potassium for now). My diet is poor with too many ready meals as by evening I can not stand to cook; I care for Mum with dementia so do her supper most days making it late and I am exhausted by the time I get around to doing mine.

I am 59, was medically retired from teaching due to spinal issues 6 years ago. So am broke but do not have work to add to the mix thank goodness! I am overweight, bmi just under obese which does not help anything but is hard to attack when always tired and can’t walk much anyway. Plus I like cheese! In fact cheese has been my mainstay for most meals for a long while…does not help and obv between cutting Ph and Na means it has to go!

Sorry for such a long post but everything impacts on everything else and I am at a bit of a loss. Thank you to anyone who gets this far! Anyone had major surgery with 4/5 CKD? My hope for the future was based entirely on having this done. What can I eat? I have been cross referencing between low Na and low Ph and see little left! Thank goodness I do not need to cut out potassium.

Hello there...

Sorry to hear all you've been through.

No experience of major surgery at that stage (apart from a kidney transplant), but with regards to foods you can eat - well, white carbs are your friends.

White bread, rice and pasta are all low sodium, low phosphorus and potassium. Chicken and turkey are also good as a protein source, as is fresh fish.

Feta and goats cheese are low in phosphorus. As is cream cheese, cottage cheese and buffalo mozzarella.

If potassium isn't an issue, most fruit and veg are also fine.

But stay away from dark colas. They are a kidney's enemy!

Ready meals are also bad, but we all know that. From a salt perspective as well, which again hates kidneys.

I wish you well - and hope you get treatment soon.

x

@nostoppingnow so your eGFR has recovered from 5 to a baseline in the high 20s? That's great news in amongst all the tougher stuff you are dealing with.

FWIW DH had several heart procedures with stage 4/5 CKD and an eGFR in the high teens, culminating in an off-pump CABG. He is a similar age to you and takes the same drugs you do, and had the same issues with phosphorus and sodium – he did have to take drugs for these in addition to making dietary changes as the latter just weren't making a significant enough difference.

I don't see any reason why you shouldn't have spinal fusion surgery once your stats have stabilised and sodium and phosphorus levels reduced a bit. Do ask if you have any specific queries and I can check with him.

Kidney care uk have a kidney kitchen section that has recipes. You can filter by low phosphate/low potassium etc. It’s very helpful. Have you seen a renal dietician?

Oh thank you for the food tips @MissKittyFantastico84 , that has made me feel less panicked while I learn.

@thing47 was your husband very hypertensive when he had his surgery? I guess so given the op. Good to hear it did not have a bad effect on kidneys that was not manageable.

@OrganTransplant123 goid website. Thank you. No suggestion of a dietician. As also overweight I wondered…. See the Renal chap again in Jan so I will ask if I have not got on top of it by then.

I have not been on MNet much for a long while, so glad I thought to check in here. X

The phosphorus avoidance is confusing. Avoid anything with added phosphorus, yes a pest but simple. However I am confused by vegetables etc. I have seen suggestions I can eat tomatoes and mushrooms, but also advise not to. Is there a definitive guide I can use? If considering phosphorous in fruit and veg is there a cut off I should keep in mind. I have gone to almond milk in tea (surprisingly ok), goats cheese and am not using convenience foods but am craving tomatoes and mushrooms. Is a portion of one or other per day ok?