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’s encouraging @FuzzyPuffling it can go up and down so no need for panic yet.

Mine has gone back down to 17 and my potassium is high again. It’s so hard to eat high calorie but low potassium. The nurse today referred to me to the practice dietician to see if she can help. I spoke to the rental dietitian a while ago but I’ve lost weight since then and really need to put some back on. Most high fat foods are also high in potassium!

Hello! Apologies for radio silence, this dropped off my threads. Hope everyone is doing ok (under the circumstances) and lovely to see another IGAn person @MissKittyFantastico84

So I am officially on the transplant list now. Or at least I think I am. My consultant has written to the transplant surgeon asking for me to be activated but I’m not sure if that’s it, or if I’ll hear anything back. My last two eGFR came in at 13 so I’ve been transferred to the PD specialist. Next appointment mid December but almost certainly will be a telephone one.

I find myself starting to wobble a bit now. I know that PD is definitely the way I’d like to go but I’ve found myself wishing it wasn’t happening at all. I’m usually fairly pragmatic about it but it’s getting very close now. I’m a travel agent who loves travel (obviously) and would usually have a couple of holidays booked for next year but not knowing when I’ll get surgery to fit catheter or when I’ll actually start dialysis means that’s not an option.

I think I need a boot up the arse and a reminder that things could be a lot worse.

Hi @HairyPotter have you got a kidney nurse you can ask? We have one attached to the unit and she is really helpful. I got the impression that you only go ‘live’ on the list once you’ve spoken with the transplant centre. They give you info on what to expect, how the call in works etc. I know what you mean re future planning. My DH is keen to books a post vaccine holiday but I don’t like to remind him I might be on dialysis by then.

I had a stress echo this week which was the last bit of my pre transplant prep. It was really very unpleasant!

Live kidney donations are amazing. When I was last in hopspitalmhaving an e was a pool of three people, all donating to strangers in the hope their loved one would get a kidney. So brave. My friend was also a living donor to her husband. I think any living donor is amazing. Funnily enough, I had hoped to become a living donor, but alas my kidneys must have got the memo and decided they wanted to stay out and grew tumours instead.

I've had quite a whirlwind since I was in A&E with kidney infection. Got COVID! I survived, wasn't too bad, just headachey and slept for a week. So glad, it could have been a lot worse. Still fighting off my kidney infection though. On my third lot of antibiotics.

Also been out on amitriptyline for pain. Felt like a zombie for about a week, starting to improve now.

@HairyPotter being on the transplant list must be a scary notion. Do they offer any form of counselling while you're waiting, or after it? I'll likely need a transplant at some point, I hate the idea of anything alien being inside me, even my tumours make me panicky, so not sure I'd cope with a new kidney.

Has anyone on here ever thought of going to india for a transplant

Thanks @OrganTransplant123, my consultant thought it would be an idea to do all that before my function deteriorated too much. Just as well as it turns out thanks to Covid I probably wouldn’t have been able to meet my surgeon. I was there just before Christmas and met him and the transplant coordinator so all that was left to do was activate when my function dropped low enough for long enough.

The meeting with the coordinator was the only time I’ve cried throughout all this. As you say, the how the call will come in, what needs to happen when someone does for their organs to used etc. The harsh reality that someone needs to die to save me just overwhelmed me.

I feel really conflicted about a live donor, my close friend offered but didn’t make it pass the first appointment and was ruled out on medical grounds. The only other possibility is DH who I know deep down isn’t keen (terrified of needles) and my two dds are not an option as far as I am concerned. I don’t know how I would cope with the guilt if anything happened to my live donor. I know it’s unlikely but the thought of that scares the life out of me.

Well that’s good @HairyPotter so you are good to go. Are you jumping every time your phone rings? I think I’d be on tenterhooks at the start. I’m sure you get used to it.

I’m not sure about a live donor either. I haven’t any relatives suitable, I want to save DH’s in case my DD needs one. My kidney nurse said to ‘ask around’! I’d feel too responsible for the donor and their future health.

Definitely no jumping at phone. Have no expectations that it will be anytime soon. I’ve bought a lovely leather overnight bag that I’ll gradually buy bits and bobs for to use when I go in for op but can’t see I’ll need it for years. Unless DH is cleared to donate. He’s not a good enough match for me so we would use the pairing service. My consultant has said to talk to everyone and let them know I need a donor and you never know who might offer. The thought of that is mortifying and I can’t bring myself to do it. I’ve heard (and seen) people asking for donors on local Facebook sites as well. I admire their bravery but it’s so far from what I’m comfortable with.

Hi everyone! @HairyPotter and @AdditionalCharacter good to see you back again.

Hairy...i think you have done amazingly well to only cry at your last appointment, I cry at all of mine, the poor renal staff
I was talking to a friend about packing a bag for my transplant...she said it was like going in to have a baby except the new life gets put in your body rather than taken out! Thought that was a nice way to look at it!
I also feel really awful that someone who doesn’t even know they are going to die yet is my hope for the future, it’s so conflicting but then at the same time I hope I can turn a tragedy into something positive.
I am going to do PD too, the dialysis nurse was great and we think I might actually do it in the day, with about 3 exchanges a day. I am quite a private person and hate the idea of all the machines out at night, I think slinking of for an hour might be better?
I do worry about what it would be like with the fluid inside though. I know someone who had a transplant who travelled the world afterwards, there is hope for life after this. I think you will get a kidney really soon!!!!
I feel it.
I am not quite on the list yet but started my work up, had my heart scan with full breast out...so embarrassing even though I have given birth it felt very undignified with the male radiographer!

Additional Character...you had Covid!! Does it feel a bit of a relief now to have got it out the way after worrying about it? Hope you are ok generally despite the lingering infection.

Sending love to everyone, everything will be ok in the end, and if it’s not ok, it’s not the end!! Think I read that on Mumsnet...

Just to say been thinking about everyone on here!

@HairyPotter

Definitely no jumping at phone. Have no expectations that it will be anytime soon. I’ve bought a lovely leather overnight bag that I’ll gradually buy bits and bobs for to use when I go in for op but can’t see I’ll need it for years. Unless DH is cleared to donate. He’s not a good enough match for me so we would use the pairing service. My consultant has said to talk to everyone and let them know I need a donor and you never know who might offer. The thought of that is mortifying and I can’t bring myself to do it. I’ve heard (and seen) people asking for donors on local Facebook sites as well. I admire their bravery but it’s so far from what I’m comfortable with.

The call will be when you least expect it! Was expecting dh's to be midnight on Christmas Eve or something. Watched too many films.

He got his a regular weekday morning while I was on the shower. He turned it down (very tricky decision) but got the second call a few days later while he was out on a walk.

In the shower not on!

Maybe what you meant was on the loo ha ha but too polite to say

Thanks for thinking of us Tobee, have seen you posting on a couple of other threads, praying the vaccine will mean you can give your DH that hug soon, was really sad to see that post. What a year eh?!!

Thanks for your kind comments @SandysMam!

Yes I after I corrected my post I immediately thought "that looks like I'm trying not to say on the loo"!!!

I know also that even after this pandemic retreats plenty of people will still be going through all kinds of medical treatments. The spotlight of health and people with "underlying conditions" just what be front page news anymore.

Sounds like you and the dialysis nurse have it all planned to suit you @SandysMam.

I'd like to think I'm more relaxed about having had COVID, but I'm not. I've read that those getting it again have got it worse, so still keeping up with neuroticness. Was hoping that my consultant would increase my medication to the full amount, but he still wants me to stay on half despite it doing nothing to the tumours.

Hope everyone is managing ok.

Hope I’m ok to join here. I had a very severe kidney infection last year which was not really investigated and seen as a one off, but I then went on to have repeated ones. I never really recovered from the first. Eventually they found I have a deformity of both kidneys, and my kidney function has been severely reduced ( not sure why this didn’t happen earlier and neither are the drs). They have told me I need to have surgery on both kidneys next year and there is a risk that I may lose all kidney function- though hopefully it will improve. Googling proved a bit scary but I have an appointment to explain it all to me tomorrow ( I was in shock when they told me all this).

I’m really hoping the surgery will be successful, and wanted to ask about recovery times. I will be having keyhole surgery - how long does it take to recover from kidney removal? In reality as I have 5 children and rest won’t be on the cards. Also, are there dieticians who specialise in kidneys? I’ve been given sheets telling me to drink lots and have a low protein and purine diet ( I get kidney stones and because of the deformity even tiny ones cause huge pain), but I’d really like to talk it through with someone.

It’s been very traumatic, particularly finding out my lifelong continence issues are due to this, and it’s never been found before.

Hi @Copperblack glad you found us!

Sorry to hear about what you are going through, kidneys are so different and no two problems seem to be exactly the same. They are so complex too!

I think it sounds really positive that the op might work, but scary never the less. This is a good place to have a rant about how shit it can be but also there is loads of positive bits too if you have a good read through.

I can’t answer all your questions but think you will need at least a week complete rest after the op (that is that live donors are told so imagine it is the same!) and yes your renal unit should have a dietician you can speak to. They may also have a counseller which might help.

It's great this thread is still going and looks like it's being a great support to lots of people.
My last bloods showed gfr of 49 so only slightly decreased but my acr (urine) was down to 75! It had previously been over 400. Not sure what this means for the prognosis now - just wait and see and keep fingers crossed for another 12 years.

Hi all

@fairplay there should be a dietitian that works with your renal unit. Ours is great. I’ve only spoken to her on the phone due to lockdown but she has been really proactive. I’m struggling to gain weight while being on a low potassium diet so she is helping with that. Try ringing your unit and ask if you can be referred.

@HairyPotter During your pre transplant list prep, did you have to go on an exercise bike?! My consultant seemed to think that the anaesthetist might do it. I’ve already had a Dobutamine Stress echo cardiogram so I thought that was it for heart checks.

So glad to have found this thread! I have polycystic kidney disease, have known about it for 29 years but fortunate enough to have an eGFR of 37 currently. It's reasonably stable atm after taking a massive nosedive having DD (it dropped to 47 from 80!). Fortunately DS didn't affect it as they delivered him early to avoid me getting ill again. I had pre-eclampsia in both pregnancies and was really ill with DD, although didn't realise it at the time.

I have quite a relaxed attitude about the future as I grew up with it being 'normal'. My Dad had PCKD, as now does my brother and my two cousins as well. It's supposed to 1:4 hereditary rate but doesn't seem to work like that in our family

DF first had PD when I was around 5, in those days it was only available as 4xday so he used to do one bag change at work and the others at home. One day his car got broken into, they stole the cool bag with his used fluid in and left behind a Bart Simpson telephone and some headphones. I think we got the better deal! We went to France with Eurocamp twice during this period, as well as to Spain and all his supplies were delivered ok. He had his transplant a couple of years later - my parents had gone away for a wedding and when DM came to pick us up as planned she told us they hadn't made it to the wedding and DF was in hospital - the call had come at about 5am and they'd had to leg it back to the hospital as they were miles away! I still remember her telling me to this day, all I wanted to know if it meant we could go camping again (we did!). DF had his transplant for around 18 years before it failed, in that time they travelled all over, Iceland, Canada and Australia to name a few. He then went back on PD and used to do it overnight. During this time they would still travel but the furthest they went was Italy, he struggled with going anywhere too hot because of the need to balance fluid levels. Sadly he died 4 years ago, partly due PCKD but he also had heart problems - he survived a quadruple heart bypass with his transplanted kidney!

As someone who has grown up with kidney disease it becomes a part of family life, and you learn how to do things differently. I still have amazing memories of my childhood, I don't feel disadvantaged in any way because of what DF went through and they're certainly not the memories that are at the forefront when I think back. It's reassured me as at some point my DC will go through the same thing with me. Not sure DH realised what he's signed himself up for but it's a bit late for that!

Just read my post back and I have known about my PCKD for nearly 20 years, not 29!

Hi zebrapig, thank you for sharing your Dad’d story, always really inspires me to hear that kind of thing, there is hope for the future you know? Even on dialysis. I hope your function sounds stable but if you are anything like your Dad who sounds amazing, I bet you will handle whatever you need to.
Good to hear it from a “kids” point of view too, my biggest worry in all of this is how it will affect them. Thank you so much xx