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!!

That should do, Additional as long as you have perfected your "innocent and casual" look.

Hello Kidney Friends!

Just wanted to pop by and let you all know that my transplant happened nearly two weeks ago now. All went well and I'm now just resting and recovering at home.

The NHS were incredible and I knew I was in really safe hands. I was even out of bed on Day One to brush my teeth! The Fentanyl withdrawal was actually the worst part but once I was off that, I started to feel better and better.

My brother was home from hospital the day before me and he is also doing really well. My hero!

So far, all my numbers and levels have been great - I've been very lucky, and I feel very grateful to be here in this position.

Now I'm just chomping at the bit to get back out there and on with my life!

Sending you all love today. Thank you for all your kind words and online support in my journey to get here.

xxx

That’s fantastic news @MissKittyFantastico84 so glad to hear you and your brother are recovering well!

Excellent news! Hope you continue to heal well

Amazing news @MissKittyFantastico84
Hope you're able to start getting out and about soon and that you're not too sore.

Wonderful news @MissKittyFantastico84 thanks so much for keeping us updated! And thank your brother from us on the list for eliminating some of the competition keep us posted on how your recovery goes!

Hope everyone is doing ok after the storm? We had no power until this morning, had to go to my parent’s to heat up my bag for dialysis! Need to have a back up plan for future power cuts for sure!

Hello…. Can I drop in for some reassurance / support?

I’ve got multiple autoimmune issues including lupus and Addison’s disease and they want me to have a kidney biopsy because they’ve found some blood in my urine (not visible but there in every sample). Initially they said they weren’t sure if the blood was from my bladder or kidneys and tried to test it to find out which but it wasn’t possible so now they want me to have a biopsy.

I will be honest, I am terrified. I have severe medical ptsd from various things I’ve had that have gone wrong - had an elective c section due to previous birth trauma and during the op they discovered I had grade 4 placenta issues and I lost 2.5 litres of blood and nearly died. That was 9 years ago. Since then I’ve had all sorts of traumas - misdiagnosed with panic disorder when I should have been diagnosed with Addison’s and that nearly killed me. Blood tests are a nightmare, I don’t stop bleeding for 6 hours afterwards. All sorts of shizzle. I could write pages.

To compound the difficulties of it all I am also trying to care for my young son who has autism and learning disabilities who is signed off medically with anxiety as his sen school is effectively awful all of a sudden so I’m trying to find him a new school and he’s home with me 24/7. I love him to bits but it’s hard - I’m on the highest rates of PIP due to all my health issues so it’s hard not having time to rest as I’m trying to keep him busy all day doing things.

My dh will obviously take time off work for the biopsy.

But I’m so close to saying I don’t want to even have it done. My blood tests are normal, my urine is normal apart from the microscopic blood. I’m assuming it’s probably lupus related but I feel if it is the treatment will either be immunosuppressive medications which I’ve tried several and they all just make me feel awful, or more steroids which I take already. So I really feel what is the point?!

Feeling very distressed and anxious.

I should add I’ve also had an ultrasound and MRI and no lumps or anything nasty on my kidneys. All clear.

I have no medical advice @Bagelsandbrie but just try to stay calm if you can.
There are so many things to worry about in this world, most of which will never happen so just take a few minutes to breath.
Try to find out why they want to do the biopsy and what the benefits will be.
Then at least you can make an informed decision about whether the result will have a positive impact on your long term health. It is your body, you can say no.

The thing I have learnt from my years of having kidney worries is that the worry is very often worse than the actual illness.
I am on dialysis now and the happiest I have been for years because guess what? No more worrying!! (Or less worrying, I always find something!). Try to deal with the fact that today you are ok and when you’re not, you will cope. You sound overwhelmed with life so just try to be really kind to yourself and take all the help you can get.

I get where you're coming from @Bagelsandbrie. When I was diagnosed with my medical condition, I had to have a multitude of tests and scans which sent me spiralling into a fear of anything medical, including dentists. I refused to go to even my GP as it always ended up being something else and my condition is quite rare so felt like a bit of a side show.

My best advice would be to speak to whoever wants you to have the biopsy, do a pro and con list, and see how you feel once you've done it. Also, FB support groups for people with your condition are helpful and usually full of people with a font of knowledge.

I've not had a biopsy don't before, but have been on a Ward with people who have had it done, and they've all come out of it relatively well, but does entail 24 hour bed rest in hospital.

Thank you both @SandysMam and @AdditionalCharacter I appreciate the replies - and I know I probably sound on the very edge of sanity! I think I’d just finally got to a point where I sort of accepted my own bad health and could live with it, taking painkillers and various meds etc, and now I feel shaken again and full of uncertainty. Lots to think about.

Hi @Bagelsandbrie
Sorry it's all a bit shit.
No great words of wisdom from me.

FWIW I've got to the point where when I get crappy test results or things that need checking out I just feel like "bring it on... I've coped so far... I'll cope with whatever comes next". Not quite sure how I've got here, but it helps me. And swearing. That always helps. 😁

@SandysMam have you registered as a priority customer with whoever is in charge of your electricity network? They are meant to prioritise getting it back on faster in the event of a power cut.

Sorry to hear that @Bagelsandbrie I’ve had a liver biopsy and it was ok. The actual biopsy thing was so quick, the worst bit was lying flat afterwards for 6 hours! It sounds as though you need to be certain about possible benefits before going ahead. You could ask to speak to a CKD nurse at your renal unit.

OMG power cuts @SandysMam! What was the advice from the hospital in this situation? What if you are on a machine over night!? I had no idea manual changes involves warming the bag too. By the way @Sandysmam are you me in a parallel universe? I am a total worrier (I think all the worriers find their way to this thread!). Agree the one good thing about heading towards dialysis is knowing I have hit rock bottom and will not have to worry about decline of eGFR for a while. I bet that feels amazing even if everything else is s#!t!

Hi @Bagelsandbrie that is a lot! I would be going back to the Drs to discuss risks and benefits of doing the procedure. Sometimes I do think Drs are very quick to run tests but do not consider the patient. In my case my diagnosis has mentally crushed me! There is no cure and nothing I can do - I have had to live the last decade in mental turmoil! I'd have been much better off not knowing and dealing with it down the line when my kidneys actually failed (it is only now I am noticing symptoms and need intervention). I am still very angry about it all!! Obviously your situation is different so get some proper advice. Also I totally relate - juggling health around little kids and life in general sucks .

Yes you have to warm the bag for a bit so it is body temperature otherwise you get a shock! They give you a hot plate thing but you can use a hot water bottle so I think a little camping stove would at least let me do that in case of future outages! I will look at registering though @OrganTransplant123, thank you, they might have little generators they give out in those cases etc. How are you feeling? Hope your recovery is going well?

@queenofwobbles we might be the same person ha ha goes to show how the worry of it all is pretty universal in a kidney failure diagnoses. Hopefully I have helped set your mind at rest a bit though, and it’s honestly not really shit at all. It’s just another chore to add to the list and as I’ve said before, the chores actually all feel easier now because I feel so much better!

Thank you everyone for your support and kind words. I really appreciate it. I’m waiting for my consultant to ring me back and I’m going to chat with them about it all.

@SandysMam I have not met anyone else in real life who is still working and juggling a young family going through this crap. Still feeling very angry at the injustice of it all! And yes, you have been a massive help - an INSPIRATION dare I say it! It helps to know you are getting on with life just the same. Are you back to work like normal now? I am dreading it from a work perspective mostly - not knowing if I will be able do my job on dialysis, and how much sick leave I will need, and if they will find a way to give me the sack! And then the same for transplant recovery time if I am lucky enough to get a call. (Not that I love working but we all have bills to pay so this is what stresses me the most!).

Didn't your hospital even get in touch to check you had power or suggest what to do? Maybe you would have to travel to the nearest hospital with power if you are on a machine? This is stressing me out already!

The hospital didn’t call to see how I was! I guess they figured I would call them if I needed help and the unit has lots of vulnerable older patients so I like to think they would have been busy with them. They kind of know I can cope quite well so I’m probably quite low down on their list of those to be concerned about.

As for work, I went back as normal after a month BUT I work for the NHS in an office so they are pretty accommodating of disabilities and it isn’t anything particularly strenuous. Might have been different if I was in a physical job although reckon I could manage most things now although have to watch the tube. If I were you, I would try to save up to have a month off if you only get SSP (depending on the type of work you do). You will need at least a week after the insertion of the tube. I felt roughest in the weeks between before commencing dialysis (this is PD, no idea for HD) and having the tube fitted so it was a relief at that time not to have to go to work.
I wasn’t to to much at all really so DH was also off to look after the kids although I could have just about managed if this wasn’t an option, I just felt knackered and anxious AF about what was to come.
I then felt markedly better about 10 days after starting dialysis but this is different for different people. At no point was I incapacitated (apart from a few days after the insertion).
Unless you work for a complete and utter arsehole I cannot imagine a boss who would deny you sick leave for kidney failure or make your life difficult because of it.
You would be protected by the Equality Act I should imagine (used to be the disability discrimination act). Once your GFR gets below 15 it probably won’t be long so maybe have the conversation with them to put your mind at rest. This is definitely a situation where money would make life so much easier because you’re right, bills have to be paid whatever the state of your kidneys. Yes there are benefits etc but if you are used to a certain way of life then you can’t just lower your lifestyle. Although we always have lived more frugally as a result of the illness, just in case.

Thank you this is good to know - I think I will end up doing PD like everyone else seems to start on but am also feeling anxious AF about it especially infection risk which seems very common. I am living the frugal life with you for same reasons! Have to laugh at the nurses who always go on about how you can still go on holiday on dialysis like its the most important thing What is a holiday again?!

@queenofwobbles I needed longer off work when I started dialysis but that was a combo of me feeling awful at the start and then learning how to do home HD. I think I had 4.5 months off in total. After the transplant I felt fine after 6 weeks and could have gone back to work if I still had a job! Obviously that’s sitting at a desk work nothing physically strenuous.

I thought I was well enough to go back to work 8 weeks post transplant but it was all a bit overwhelming tbh. Physically I was fine, but my head was a bit of a mess. I think I was finally well enough type start processing 5 years worth of crap.
So I was encouraged by my consultant to take 3 months off, which a was what OH had recommended in the first place. It was great to have a decent chunk of time to just focus on getting active and well in a single minded way.

Hello BagelsandBrie
I too have lupus (plus a few other AI conditions) and kidney disease. I too had the conversation with my rheumatologist about whether or not to do a kidney biopsy and we came down on the side of "not yet". But I do feel for you; I was really worried about the procedure, and the recovery time (it would mean an overnighter in hospital for me as we live such a long way from any medical facility).

For me, I weighed up the possible benefits of knowing if I had lupus nephritis, or just "ordinary" CKD and if that would have any implications for possible treatments or prognosis. I have my kidney function tested every few months (should be every 4, but it's 7 since the last test because covid, you know) and no one seems terribly concerned.

But I hear you. Lupus is a bugger. It affects every bit of you. Including those pesky kidneys.

@ShinyHatStand that sounds very sensible - I probably don't think about my head enough in all this! Good to hear it was a quick recovery otherwise.

@OrganTransplant123 thanks for sharing - they did tell me 3 months to learn home HD and it is hard to work around that. How are you doing now?

I feel the guilt since I feel like I am inconveniencing people! I think nearer the time I might feel more sick and feel less guilty! I need to toughen up and think about myself.

Hope everyone is keeping ok which ever stage you are at!

Hope everyone is doing fine with their new kidneys.

Just need to let off a bit. I've had a swollen stomach for a bit now, and I've always put it down to my tumours. I've lost a bit of weight and I look heavily pregnant, a few people have even asked if I am. My friend posted something about ovarian cancer symptoms, and I have them all. Did an econsultation with my GP Friday, and they had me in today taking bloods and examining. They want to rule out ovarian cancer as can't confirm my belly is kidney related. I'm also having a scan, the speed depends on the blood results.

I am so annoyed with my body. It's probably nothing but you know when it always seems to be you with everything, or every time you see a GP they find something else, or a worsening of your condition.

Ah additional, so sorry to hear this, more worry, more stress. I know exactly what you mean about it always being something! Haven’t we had enough to deal with when some people skate through life with absolutely nothing at all! People say “be positive” but it’s very hard when you only get bad news. Hopefully it will all get resolved very quickly for you and will turn out to be nothing. Keep us posted xx