Rubbish Kidneys Support Thread

[SandysMam]

Inspired by chatting to a couple of other posters on different threads, I thought I would start a group for anyone struggling with kidney failure, dialysis or after a transplant.

Kidney Disease is a massive problem in the U.K, but in my experience, when you say you have it, people don’t really understand what it means.

Personally, I have kidney failure, an eGFR around 20, and am expected to need dialysis or a transplant anytime from now really, although hoping I can hang on a bit longer.
Excuse me if I am a bit vague about some of the details as some are quite identifying.

Physically, I often feel absolutely fine, but on bad days am exhausted, dizzy, and my brain feels foggy. I bruise like a peach and my eye bags are horrendous, but I generally look ok which is why it is so hard for people to understand the illness. I work, exercise, act (mostly ) normal!

The mental side is worse though. Waiting for the thing to happen that I feel means the end of the world but might not be. Fearing every blood test being worse than before, dreading the day I have to have dialysis. Dreading what that might mean for me and my family.
I don’t have anyone suitable, or offering to give me a kidney, and I feel so deeply uncomfortable about friends thinking I might be after theirs when I mention my illness.
I also feel so sad that my only hope is someone else’s tragedy (from a desceased donor) and this pains me mentally and makes me feel like a terrible person. I also know a transplant isn’t a cure all and comes with it’s own issues.
I just wish my kidneys worked!!
I wake up in the morning and forget for a second, before remembering and my heart sinks.

BUT!!!
Kidney failure has made me appreciate life in a way I never would before. I do not sweat the small stuff which is a lovely release.
Knowing about it has allowed us to plan, so financially we should be just about ok, and it won’t come as a huge shock when it all kicks off.

I would love to hear from anyone going through this, or anyone who has and can speak from experience of dialysis or a transplant. Feel free to rant a bit but also hopefully some positive stuff.

I am rubbish at checking threads but will try to come back to this one, even if no one else joins, it might serve as a nice resource for others to know they are not alone.

So...if you are renally challenged, welcome!!

Sorry so many typos in there! Hopefully you get the gist

Hi zebrapig, thank you so much for sharing your experience, it’s given me some hope for the future that we might be able to continue travelling. It was a big part of our retirement plans which I thought might have to be shelved. You’ve made me realise I need to think what we could do, rather than what we can’t.

PP mentioned the Dobutamine stress test - DH had this back in Jan as part of the assessment for transplant. Unfortunately it had to be abandoned after a few minutes because his heart was in a peculiar rhythm which apparently suggested poor blood supply to parts of his heart. The cardiologist doing the test mentioned a bypass might be necessary. DH was then referred for a perfusion scan (I think that was what it was), and after waiting 6 months for the results we were told there’s no problem with the blood supply. So no bypass needed, and the transplant surgeon was happy to activate him on the donor list.

I’ve had all my tests as a live donor a couple of weeks ago, and I have an appointment in early Jan to discuss the results, I’m trying to be positive about being suitable. I know I’m no use for DH, so we’ll need the pairing scheme.

I’m so grateful for this thread, it’s helping to keep me sane. DH is a bit more laid back about what’s to come, but I just feel to be in a permanent state of stress !

Ah Redbrook I’m so glad you find some comfort in this thread, that’s exactly why I started it!

I have had a lovely day, nice walk with the DC’s and then did the Christmas decorations and watched the Christmas Chronicles 2 which was brilliantly cheesy!

I try to remember that a year ago, if you had told me my eGFR would be 16 this time next year (as in now) I would have been distraught and said there was no way I could carry on like that. But I AM carrying on and enjoying life still, running around after my little ones and feeling ok. I guess what I’m trying to say is that maybe just maybe this means I will also cope with whatever lies ahead, and while it’s not going to be easy, it might not be as dreadful as I fear it will be. Let’s face it, none of us can predict the future, I think 2020 has made that very clear so am just going to try to enjoy today as much as possible, maybe your DH is just really good at doing that Redbrook!

Just popping in to wave at everyone, and say how pleased I am that this thread is carrying on.

My DH had a load of blood tests last week and they happened to note his kidney function was below par. His eGFR? 80!! I laughed!

Ha ha the stuff of dreams!! Hope he is ok though after the bloods!

I know exactly what you mean SandysMam, 2 years ago DH had an egfr of 18 and we were really really worried, but when he got the same result a few weeks ago we were delighted ! So perhaps it’s all about managing expectations. There’s no point stressing and hoping for a 22 when actually a 16 is fine and life continues relatively normally.
FuzzyPuffling, I had something similar with my dad (aged 85) - he had been seeing a haematologist and she mentioned “seriously impaired kidney function”. It was 59.

It's definitely all relative. My function tests always come back as "abnormal but expected". Which is doctor speak for "tough bananas"

DH has new issues from his cancer treatment. Not the cancer but the treatment. But that's a whole other thread!

Hi @Redbrook Thanks that was me asking about the stress test. Glad all was OK with your DH heart wise in the end. I’ve not had the results yet but I hope they don’t want to repeat it.

I just found out at mince pies are high potassium. In face most delicious Christmas food is off the menu and I’m annoyed!

Hi everyone- I'm mid panic at the moment. I've had right side kidney pain for a fair few weeks now and increased urination. Did my own dipstick which came back positive for blood and protein so ordered a private kidney function blood test as I've been fobbed off at gp's before and they make me feel like I'm a hypochondriac.
Anyway- got the results this morning and my creatinine is 121 and my eGFR is 46!
Are there things they can cause this temporarily? Kidney stones maybe- tho I haven't had an other symptoms. Or am I right in thinking it's not going to be good news?
Sorry to hijack

Hi strawberry I've got no idea about what can cause kidney issues, except from my experience kidneys are delicate little buggers and go all wobbly at the first sign of infection, or stones as you say. Hopefully it's a blip (what's your normal eGFR?) and your GP will be rather more sympathetic when you present him/ her with evidence. Good luck.

@FuzzyPuffling thank you. I've never had it done before so don't know what normal is. I'm 32 and don't have any other health conditions so feeling 46 is really low :(
I'm one to incessantly google and a definite worst case scenario person. Hopefully they will send me for some further tests now

Hi @strawberrymelons that’s funny because I saw your earlier thread and was going to hop back later if you had problems diagnosed to steer you in our direction.
Try not to panic, it could be a host of things causing a temporary drop, just follow along with the doctors advice and they will get to the bottom of it!
Don’t google too much, it will raise your blood pressure which is not good for kidneys.
Remember, it is really common to have low level kidney problems, hardly anyone with these problems progress to end stage (we are the special ones on this thread ) and it is more than extremely likely you will chug along your whole life and never be bothered by it.

Deep breath xx

P.S I have a eGFR of 16, I dream of a 46

@SandysMam
Thank you so much for your reply. It's really lovely. You're right no cause to panic - it's the uncertainty that gets to me. I'm quite good at dealing with things when I know what it is I'm dealing with. But things like this and waiting throw me. My son was really ill in January and I never want to set foot in a hospital again. Trying to not think about it.
Thank you- apologise for hijacking your thread. I've actually read every post and you are all amazing.

Never a hijack, always welcome but hopefully you won’t need to come back lol!! Take care!

As an aside, my mum had kidney (and heart) problems for most of her life. She died last year, having had virtually no treatment for either, aged 95.
Panic ye not!

So I had my consultation with my surgeon and he has said he wants to operate on each kidney separately as there is a risk I will lose all function from having a partial removal (1/10 chance). This means 2 quite big surgeries. He’s also only done this surgery 5 times, though has done similar ops 300 times.
He has also put me on daily antibiotics and suggested cutting animal protein from my diet.

I’ve asked not to have details on my kidney function as I think I will focus too much on those numbers. I know my right is much worse.

I’m really struggling with lockdown. I have to drink a lot of water and am virtually a prisoner at home because there are so few toilets open. I’m in tier 3 so it’s not going to get much easier.

Copperblack that sounds very tough for you. What a lot to process.
And I'm sorry that lockdown is so hard for you ( I get that bit, my DH is CEV, so we've been in personal almost lockdown since the start). Do try and get out for a daily walk (wee, walk, home, wee, drink!) . Keeping as fit as you can will help you now and through surgery. But you knew that, I'm sure!
Anything we can help with?

Just a little update- I had repeat bloods and gfr is 65 which is obv much better- but looked back at last year blood test and it was 88. I have been given antibiotics as gp said dipstick showed slight bacteria so could be infection. However the pain is getting worse not better so I'll be going back this week as gp said she will refer me for scan if pain still there. No uti symptoms still just this unrelenting hot pain in my right flank. Thinking maybe kidney stones but from everything I've read I would expect the pain to be much much worse. I am still functioning pretty normal just annoying more than anything.

Strawberry melons, it can take quite a lot of investigation to find out what’s wrong in my experience. Insist on a referral to a urologist. It took quite a few different scans to find out what my issues were. I have issues with tiny kidney stones because of my dodgy kidney anatomy and the pain does vary. It can be excruciating but also just like bad period pain but in my sides. Drinking lots of water can help.

Diclofenac is in my experience the best painkiller for kidney pain. It’s not given out routinely but do ask for it to try.

My letter from the hospital came yesterday suggesting I will need 2-3 months help after each op- 6 months of being fragile. I’m not sure that’s preferable to the infections at the moment.

Hi everyone,

I had my bloods done yesterday. I checked online and I’ve hit the dreaded eGFR 15. I’ve been feeling worse so it isn’t that much of a surprise but still...

How is everyone else? @SandysMam we had the same eGFR last time. Hope yours is better than mine!

@Copperblack
Hi- thanks for your reply. I had ultrasound today which I paid privately for (can claim back through work) and the doctor didn't say much other than 'all looks ok' and will send results to my gp. They scanned for any gynaey issues as well. So I'm feeling a bit down now that I everything looks ok and I probs now just have to continue in pain. Which hasn't let up. I keep wondering could it be muscoskeletal but it doesn't change with movement and actually I notice the pain less while exercising etc.

Does that mean you get bumped up the list @OrganTransplant123? Hope they can help you feel better.

I've had another rotten kidney infection. Think it's the same one I had in October. No symptoms again until I get bad kidney pain and a bad back. Ho hum. Going to put a test in next week just to be sure I don't still have it over Christmas.

Won't be drinking alcohol this Christmas, don't know if I'm that bothered.

Just waving at everyone and hoping everyone is getting through it all ok.

I’m not on the list yet @AdditionalCharacter the consultant said I’d be referred at 15 though so it should happen now. Hope your infection clears up before Christmas.

From what you have said @strawberrymelons it sounds v positive. The fact that your eGFR went up so much doesn’t suggest a downward kidney disease trajectory.

Hope everyone else is ok.