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 tough @canigooutyet.
Exercise and fresh air has saved my sanity over the past 6 months which came as a huge surprise to me - I'm not the sporty type, more the 'sitting on the sofa eating Pringles' type.
I force myself out everyday even if it's just round the block between work meetings. I can feel my mood tracking the weather. I can't wait for a bit more sunshine as spring comes along.
Take care. X

@MissKittyFantastico84 hope your appointment goes ok today! Thinking of you (no head tilt )x

Thank you @SandysMam - so sweet of you to say something. 😁

It was OK - quite intense. I had about 12 ltrs of blood taken for the tissue matching and a brief chat with the LOVELY transplant co-ordinator. She said I was in a positive starting position and she would do all she could to help me.

Then I chatted to the Nurse for about an hour. He started out with stuff like 'this is what your kidneys do' and 'these are the symptoms you might experience' and I had to stop him and be like - hun, I know this. I could probably give you this chat. LOL.

So we spoke at length about dialysis - I think in my mind I had prepared myself to accept home PD so when he said that, if I get a transplant in line, they would probably do a short period of neckline HD I was a bit shaken. I understand that it would ultimately mean that a transplant was on the way - but I guess I'd just assumed things would go one way and then I had to scrap that. I guess I'm learning that I know nothing!! Just have to take it as it comes I guess. I saw the lines they put in and he showed me lots of pictures of people apparently having a GREAT time attached to dialysis machines.

Sigh. I was exhausted yesterday but feel better today. Watched Moxie on Netflix - cute film for teenage girls but that's where my head was at! Oh, and I had a hot chocolate in bed. Self care is important.

Hope you are all well today. xxx Happy Thursday x

Hi @MissKittyFantastico84. Glad it was all ok.
I was told the same about Pre-transplant dialysis.
The day of my transplant they put a line in my neck in case I needed short term dialysis while waiting for the new kidney to kick in. Fortunately I didn't need it, but I hated that neck line with a passion. Hideous thing.

I'm sitting on the sofa waiting for my monthly call with the transplant clinic. Hate the waiting. Never have been able to get anything useful done while I wait. I find it strangely stressful even thought I've seen all my bloods and I know that all is fine,

@ShinyHatStand Although I hate the term, waiting for those calls is just 'triggering'. We've probably all had so many shitty doctor phone calls, we're conditioned to freak out. I know what you mean about the wait - I'm supposed to be working on loads of things today but my heads just gone.

I sort of hate my phone ringing now. I always think it's someone with bad news if I don't recognise the number. xxx Hope your call goes well - it does sound as though it's all good and dandy. No news is good news! xx

You are SO right about the calls being triggering. In the days after bloods I am a wreck every time the phone rings waiting for a call to say you need to come in NOW. And the calls with the Consultant are the same, physically shaking. Checking my bloods on line is the worst too. I feel like the whole thing is one big long panic, which I need to work on because it is ruining my life and that’s no way to live either!
I sometimes wonder if dialysis will actually be the bit in between now and post transplant where I don’t need to worry as I will be there already! One good thing about it I guess!!

Hope your appointment goes ok Shiny and glad yours was alright Kitty, I am loling at the pictures of happy campers ha ha although I must admit the old dears at my unit seem to have a high old time!!

Thanks all. Phone call was fine. Down to 6 weekly follow ups and happy to keep doing them by phone which saves me the trip into hospital. No changes to meds. So all good.

Ah that’s fantastic. You can relax now for 5 whole weeks until next bloods! I try to give myself “time off” with kidney stuff between appointments.

@OrganTransplant123 have been thinking of you too, hope you are coping ok with the dialysis.

I'm going to celebrate by taking tomorrow afternoon off work to cycle up a very big and scary (for me) hill. Weather permitting.

@ShinyHatStand I hate waiting for bloods as well, I think that will probably never leave us unfortunately. Even a year post transplant I'm waiting for them to say I've had a rejection even though everything has been really good since the operation.

@MissKittyFantastico84 I've had a live donation and a donor list transplant. To be perfectly honest I struggled much more with the donor list one. With the live donation it was from DH so I knew that it was given absolutely with love and he would never hold it over me. I think he knew if the tables were turned I would do exactly the same for him with no qualms. With the donor list I felt so guilty that somebody had to die for me to have a kidney until the very lovely transplant coordinator sat me down and said, look, he didn't die for you to have a kidney, he just happened to die and you having a kidney is just a byproduct, so that really helped. Likewise if you want to chat, please feel free

Morning!
Just writing a little note to myself really as have woken up with the panic and cold fear that I get about what is to come. Hope no one minds just need to get it off my chest.

So...it is not happening today or tomorrow (and probably not the next day after that either!) so for today and tomorrow just relax. Try not to let every waking moment be consumed by thoughts of dialysis and how shit it will be. Do not let the fear of it all rob you of today.

Thank you...as you were!!

I just feel like I cannot think of anything else at the moment apart from “I have kidney failure I have kidney failure life is going to get so hard physically and financially”.
People are jubilantly planning stuff for after lockdown, events in the summer etc. All I can think is no because I might be recovering from surgery for my PD catheter or how can I go for lunch if I have to dialyse then? Even stupid stuff like what if I can’t wash my hair and it’s greasy and I don’t want to go for lunch with greasy hair! I haven’t seen people for so long and they are all going to notice how awful I look now, the slight puffiness, the slightly yellow sallow skin, the eye bags.

I am just about to go down to the kids, ready to plaster on a smile but inside I just feel like they would all be so much better off without me rather than this slow, tired useless mummy who wants to sleep all day.
I am sorry for keep dragging this group down, I so love the positivity it has and believe me if keeps me going. The depression is far worse than the kidney symptoms at the moment though which seems so daft. So my goal today is to try to put the worry aside and enjoy today. A day with no dialysis or transplant Meds or tubes or fluid restrictions and to not let the worry about all those things take today from me,

Hope everyone has a lovely weekend, can we pick any worrying up on Monday and be free for 2 days please!

Oh bless you @SandysMam
I've been there.
It will pass. It really will.

Thank you Shiny, very much appreciated.

Getting it down helps me to move on from the thoughts, it does help. It’s a beautiful day today although freezing so going to try to enjoy the sunshine!

I'm now picturing you huddled in a garden chair with excessive blankets and well trained children bringing you tea and cake.

Big hugs @SandysMam xxx

Meanwhile in my (better, post transplant) world, I'm off to dig over a flower bed.

Ha ha I wish re the sitting down being served!! That made me smile though!!
I love hearing about all the post transplant stuff you do!! Keep it coming, it definitely inspires me!!

Once again @SandysMam, I'm here to tell you that you are not alone in feeling like you do. I could have written that post - I truly could have written every word.

I also feel left out of the happy planning for June 21st. It's like - the thing that has been holding everyone else's life to ransom is just going to lift and they can party and go to festivals and go back to work etc etc - while as we are left in limbo, potentially on dialysis, restricted more than we were before. I totally understand how you feel.

I also have the same thoughts about dialysis - mine is mainly 'but I love having a bath' and 'how will I wash my hair' and 'do I have clothes that will hide the line'. Also 'how will I get to the centre' and 'what if the centre is far away'. It's all just a big mess of thoughts and anxieties - things that will probably be fine in the long run, but that pre-occupy my every waking moment right now.

I also feel like a crap mum sometimes. I feel guilt that I need to sit down a lot and sometimes I get short because I'm upset or stressed. He's three, so not aware of what's going on yet. In some ways, I'm really glad of that.

I just want you to know that we're in this together and you're not alone. I'm always here if you need someone in the same position - but I'm sure the lovely people who are sharing positive post-transplant updates are much more inspiring right now.

Thinking of you today and sending love. Don't ever worry about sharing the reality of how you feel here. Like a PP said, it's not all sunshine and rainbows. xxx

Ah no I do take comfort from someone else going through it too (although I wish you didn’t have to)!

If you can do it, I can do it 💪🏼 Thank you @MissKittyFantastico84

I struggle massively with thinking nobody else has a tough time but me and that everyone else breezes through life but I know that’s not true (you only have to read the threads on mumsnet to see it’s not the case).

Thank you so much everyone for being so kind.

Meanwhile, if anyone can answer our questions about hair washing and hiding lines and showers that would be fab!!

I can answer the neckline question! @SandysMam I actually managed to wash my hair in the shower yesterday without getting the dressing wet but that was the first time I’ve tried it. I’ve been having baths or turning the shower head away, getting into the shower (water aimed away) washing my face and neck with a flannel, soaping up, taking the shower head off and rinsing. If I have a bath, I get out and dress then wash my hair over the bath. At first I had to get DH or one of the DDs to help because the neckline site was sore.

Hiding lines has been easy so far because it’s been jumper weather! I’m not sure how I’ll go on in the summer.

I’ve got a start date to learn the home dialysis so I’m really pleased about that. I can’t wait.

I agree about all the chatter from friends about post lockdown holidays, trips etc. It’s a bit depressing to think that nothing much will change although I’m hoping friends will visit.

Remember that you will feel much better on the dialysis. The dialysis days are tiring but the weekends and days in between I feel almost normal. I just get super tired in the evening and am usually in bed for 9!

Those of you waiting for transplants... do you know if your hospital is still doing live donor transplants or have they stopped for COVID? Mine stopped between April and Sept but I'm not sure what has happened since then. Deceased donor transplants never stopped for kidneys (unlike livers).

Can I join? I have a nephrostomy so I know it is nowhere near the same as needing a transplant but I am struggling with it all!

Of course @Bellag79
Make yourself at home and have a good moan

Thanks @OrganTransplant123 it’s silly that hair washing should be important at a time like that but it is!! Feeling nice and keeping self esteem up is so important. I will stock up on dry shampoo too though just in case!
Have you seen pics of Sarah Hyland from modern family out at award ceremony’s etc with her neckline in? I will try to post a pic...
Not sure I will ever look that glam, even if I had a eGFR of 100 lol but it is inspiring to see her wearing it proudly.

That is great news about training to do your HD at home, that will make a huge difference.

Shiny...I thought it was all transplants, not just live ones that were cancelled? Although it sounds like they are starting up again though.

Welcome @Bellag79 like shiny says, have a good rant if you need to, it does help.

@SandysMam my understanding is that there was huge local variation depending on local COVID pressure on hospitals. Ours stopped liver transplants because of the need for ICU beds, but for deceased kidney transplants they just tightened up the requirements to focus on those where the clinical benefit was greatest. Numbers of transplants were significantly reduced due to pressure on theatre time due to extra covid related precautions. Live donor transplants stopped for 5 months as risk to donor of contracting covid post surgery was judged unacceptable.