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!!

I didn’t tell colleagues until I had to @queenofwobbles I know what you mean about people going on about health issues. I know this sounds awful but half the time I think ‘wow, that’s nothing’. I’d be happy to have that ‘health problem’. I know it’s all relative and I’m being a cow!

Ha @AdditionalCharacter that happens to me in hospital. It’s like a klaxon is sounded that someone unusual in in clinic or on the ward and everyone comes to look. Sending shrinking thoughts.

@renallychallenged that’s tough. I suppose any donor has to be 100% on board and his brother just isn’t anywhere near that.

@thing47 can I ask a diabetes question? I’ve been recently diagnosed so this is all new to me. If you are eating at a friends house for example. How does your DH manage the carb counting and insulin?

can I ask a diabetes question? I’ve been recently diagnosed so this is all new to me. If you are eating at a friends house for example. How does your DH manage the carb counting and insulin?

Of course 😀. The honest answer to your question is that he's had it so long –plus 2 of our 3 DCs also have Type I – that he judges a lot by what he can see and how he is feeling, so it isn't always terribly scientific! ie carb counting at home has given him a pretty good 'feel' for carb content in, for example, 40gms of rice, or 2 potatoes, or an apple crumble.

He also knows which carbs spike quickly (which is easy to correct for) and which raise his blood sugar levels more slowly over a longer period of time (which is more of a pain if it's an evening meal).

That's probably not much help to you if you are newly diagnosed, however. If you're comfortable with doing so, I would just ask! It's no different from people asking about food allergies or preferences, imo, or catering to vegetarians, vegans etc which we're all used to doing nowadays. If you're not comfortable with that, you may have to just 'guestimate' and then correct later if necessary until you are a bit more familiar with your own body's reaction to different forms of carbohydrate. In which case he would recommend erring on the side of slightly less insulin than you think you need as taking a correction is better for you than cramming in glucose later because you've taken too much. HTH a little.

Apologies, everyone, for the slight digression above. I hope you'll excuse it as obviously there is a link between rubbish kidneys and diabetes.

Thank you @thing47 that makes sense. It’s reassuring that it becomes second nature in time. I’m seeing a dietitian next week so I hope she’ll help.

Does anyone have problems with blood pressure? I've had a headache for a week now, so made an appointment with the nurse today, and my blood pressure is high again, despite being on BP meds (which have now been increased). I'm so frustrated with it all.

@AdditionalCharacter I do, had high blood pressure virtually all my adult life, sorry to hear your meds are not doing the business, what have they got you on?

Thanks @PineappleSun

Im on candesartan. Now on the max 24mg. I've had low blood pressure all my life, including during pregnancy, but from September last year, my BP has been awful. It was 195/150 and I'd been having what I thought were migraines. When I started taking candesartan, I realised I'd been having headaches for at least two months and put it down to working night shift.

That is very high blood pressure @AdditionalCharacter I was on a combo of drugs at one point as just one wasn’t cutting the mustard but it was never that high. What did the nurse suggest? I presume she has booked you in to see a dr?

Doctor phoned me back and increased medication, have to go back in 2/3 weeks to see if it's gone down.

How you feeling today @AdditionalCharacter ? I struggle with my blood pressure too, I hate the way they make me feel like I’ve done something wrong!

I've not heard of that one, have they mentioned changing if it's not working? Problem with BP meds are that so many of them are not great for kidneys.

I know what you mean @SandysMam mine is very genetic, but I still feel like I'm being told off, like I'm forcing it up deliberately.

I'd imagine if they don't work, they'd look at other options.

TBH I feel really down in the dumps about it. Saw my consultant two weeks ago and I have several cysts (which have never been mentioned before) as well as tumours. My body just seems to hate me. I've spiralled a bit, need to snap out of it.

You must! Just focus on today, deep breathing and little treats, that’s what gets me through when I feel like that (which I often do).

I sympathise @AdditionalCharacter I felt completely broken down by the diabetes diagnosis. Sometimes you can plough on through some of the big stuff and then you get blindsided by something else.

Have you got your own BP machine? I find I prefer to know what’s going on rather than wait for the big stressful appointment. Nothing like a medical appointment to get the blood pressure up anyway! Many moons ago when I first started having problems the GP surgery lent me one. That might be an option.

What do you usually do to ‘reset’ your thinking? I find I need to allow myself a bit of time to feel upset before I try to regroup. It’s natural to have low days. Acknowledge that it’s shit, be upset, angry (maybe both) then make a plan.

Thanks @SandysMam and @OrganTransplant123

I normally have to have a good cry and a few biscuits. Managed that by watching the last episode of This Is Us. Feeling a bit more positive today.

I'm going to invest in my own machine, will drag DH shopping at the weekend.

Can I please join? I've recently been diagnosed with a PUJ obstruction, no idea how long I've had it but eGFR has been iffy at least the last 3 years but GP never wanted to investigate as it wasn't low enough and I wasn't having any acute symptoms. Only thing was that I was low in vit D and iron and can't seem to keep levels up.

Back in March I was admitted into A&E with kidney infection and ultrasound has shown bilateral Bosniak II large cysts on both kidneys, the one on the right in the parapelvic region which could be contributing to the obstruction or it could be primary PUJ obstruction but my urologist is going to sort the cyst anyway.

I'm due to go in for a pyeloplasy in a few days - absolutely bricking it. 3. months ago I was absolutely fine and now my right kidney is failing. This has done irreparable damage and function is down to 19% in that kidney so i'm lucky my consultant is even attempting to save it. Says he can hopefully restore maybe 10% function to the kidney.

Would love to hear from anyone else that's had a pyeloplasty and how it all went for them?

Hi @Lolacat1234 i have no idea what any of what you just said means but it had the word kidneys in so this is the place for you!!
Do know the feeling of having these things hanging over you though, so hope you are coping ok. Really hope the procedure works and that they manage to restore the function. Hopefully someone will come along with some knowledge, but in the meantime, welcome, feel free to rant or get your worries down here if you need to, it’s a good place to get it out.

Just popping on to say @AdditionalCharacter I am sorry to hear all this. You can pick up a machine pretty cheap now a days. Hopefully your at home bp readings might be slightly better. I have had so many 'they never mentioned it before' moments on this journey. It is really s#!t isn't it. Hope you are feeling better since raiding the biscuits!

Lolacat1234 I also have no idea sorry but I hope the procedure goes well and hopefully someone will be along soon who can reassure you.

Another one wishing Lolacat all the best, with no knowledge of your particular issues. Kidneys are complex little blighters.
Please hang out here with us and let us know how it goes.

Hi everyone!
Just wanted to say hello to everyone and send support & love to everyone going through the rollercoaster that is kidney failure. My OH was diagnosed with IgA Nethropathy or Bergers Disease 7 years ago and is currently on 12% kidney function, pre dialysis. It can very physically taxing for him and mentally taxing for us both especially during covid. We have not had covid yet (touch wood)
I am just wondering about peoples experience if they have had covid in the later stages of kidney failure and how they faired?

Hi @Diam0ndsareagirlsbestfriend Sorry to hear you are on the all too familiar rollercoaster with your DH. Hopefully some of our posts will have been helpful as you prepare for the next stage. As for Covid, I know a few of us have had it and still here to tell the tale including me who was mildly ill (pre vaccine) with eGFR about 14 at the time. Can’t say for sure it didn’t finish my kidneys off though but was expected to progress to end stage anyway so impossible to say. There are anti virals etc now as well so hopefully your DH/any of us will be in a better position if we got it now.
I pretend Covid doesn’t exist now, with kids in school it is just too difficult mentally to worry about it as there is nothing I can do to prevent it. If it gets me, it gets me!

Hello @SandysMam thank you for your reply, it's much appreciated. I hope your staying strong and keeping well!
Covid has been tough mentally too ontop of the end stage kidney failure, but I can totally understand why you think the way you do. We also have a 9 year old DC attending school. I think it's more of an 'when' it gets us than 'if' but it's reassuring to know that if only effected most mildly and paired with the fact there are anti virals.
My partner is my fiancé and we are going to marry later this year but stuck between a smaller wedding and having to made the hard decision between which family can/can't attend or have everyone there we love but that adds up to around 50-60 people and asking them to LFT the morn of the wedding regardless of smaller or bigger wedding. Paired with the fact there are anti virals I hope DH to be would be ok if the worst happened ...but it's the unknown! Main thing is we marry though and I want him safe and well at the end of it. I won't go through with anything unless he feels 100% safe and the decision is a joint one. I hope you are now keeping well Sandy and sending my best wishes to you x

Ah thank you for replying (people keep coming on lately for one post then disappearing!!) and congratulations on your wedding! However you do it, I’m sure it will be lovely and people will understand if you need to be careful. He might even be able to get a booster before hand to make him extra safe, be worth talking to your consultant.
I am doing good thank you, on PD and it is much easier than I ever imagined. Still have tough days but it is so manageable and I do pretty much everything I did before except swimming. I have to manage it like any chronic illness but I have done that for years anyway. Is your DH on the transplant list? You can be activated before dialysis.

Hi @Diam0ndsareagirlsbestfriend congrats on the wedding! I am about where your OH is and am very careful - rationally I know I will probably be fine (youngish and other wise healthy) but I don't want to lose any residual function if I can help it (to covid or any other nasty bug!). But others might look at it that they are ending up on dialysis anyway so lets live a little! I saw your other thread and felt you got a bit piled on about him not being ECV unless immune supressed. My unit have told me they still consider me high risk and Kidney Care UK is saying anyone stage 4 and below is eligible for access to COVID treatments. If its just about being married I would do a runner with a couple of witnesses! But if you want the big wedding I dont think you are unreasonable to ask everyone to LFT. Good luck!

Just to add to PPs, DH had Covid earlier in the year on an eGFR of 6. He had it very mildly and it really didn't affect him at all. I had it worse (in bed for 10 days) than he did!

One word of warning, though. The anti-virals have not been tested on people with severe kidney disease, they have been tested on those with mild to moderate kidney disease and the results extrapolated from there. On the one hand, this is understandable, it would be ethically questionable to test them on those with severe kidney disease in case it had a further adverse effect, but it does mean no direct results are available.

DH's renal consultant (who he's been seeing for 30 years and is the top man at a well-known hospital) advised against taking the anti-virals unless DH was very ill with Covid – as in 'needing hospital treatment' ill – as he didn't feel the benefits outweighed the risks.