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!!

Imagine if you get matched with one of our pairs and someone on this thread ends up getting yours
I have one lovely friend still in the process but not sure she will be approved as a few previous issues. It is the thought that counts though and I am so grateful for her efforts.

Hi @renallychallenged wow well done on passing the tests at least you know you are super fit! It is an amazing thing to do for your DH. I did not realise the chances of these match schemes were slim or that it is only 4 times a year - my hopital doctor raves on about this matching scheme as do they live donors (wish they would rave a bit more about good tansplants from the list!). How is your DH doing is he still on peritoneal? I am still in turmoil deciding which dialysis option (home HD or PD with the machine) and think they are getting fed up of me at the hospital! Hope you and your DH are doing well

Hello all,

@queenofwobbles the ward I was on was great, nothing like the hot post natal wards. I had private room, and the staff were really nice, although there were no cream cakes!

That’s great news @Auntycorruption although I can imagine a mixed set of feelings. I can see the sense in not getting too concerned about it until you are matched. I didn’t know they only do the matching 4 times a year.

Ooh crossposted @queenofwobbles

Don’t worry about being unsure. It’s a big thing to decide so you should take your time. Some people go for PD or HD and it either doesn’t suit then for practical or clinical reasons and they switch. The thing about HD is the time it takes, whether you do home or at unit HD.

Thanks @OrganTransplant123 They did say if you do PD and hate it then worst case scenario they could put a line in and start HD training. I am probably over thinking things! I just worry about the complications - peritonitis - and the fluid and not sleeping a wink although maybe you get used to the machine.

Glad to know you got a private suite too although not so good about the lack of cream cakes at your hospital!

I can’t speak for HD as never done it but would recommend PD. After the initial shock of it all (and I’m not pretending there aren’t tough times) it is easy to do and fits in so well with life. It is pretty flexible. I wish you could see me and how normal my life is!!

Sick of all this Covid bullshit though, I really have had enough now!! Said the whole world…

How are you feeling @OrganTransplant123? Have you noticed you are feeling any better or is it too early to tell?

Great news @Auntycorruption. When I was in hospital a few years ago, there was a three way pool swap happening, the atmosphere on the ward was amazing. Such a selfless thing to do. I also have a friend who was a match for her husband and they are both doing well faster it.

Hi all
I've been offline for a while. Dealing with manic work and family shit.
Nice to see you're all doing ok.

I seem to have missed a whole bunch of post-transplant questions. Sorry. Is there anything people are still waiting for a answer for?

My second-hand kidney is still doing marvelously.
Not getting out on the bike so much in the shitty weather so have been forced to take up running. I mostly hate it but I couldn't bear to see my hard won fitness drifting away. Just got back from a particularly unpleasant 10k plod that was not helped by a late night and wine yesterday. Still a price very well worth paying for a lovely evening with friends

Just seen the discussion about hospital wards.
The best thing about mine was the lovely patients in the other beds. All were very much more ill than me and had been in hospital far longer. It they were, dare I say it... inspirational 😁

We're still in touch 15 months on. The shit they've been through is beyond what I can grasp. They were all either liver transplants or multi-organ transplants. I was the only straightforward kidney recipient.

I'd have hated to be in a private room. When the nursing staff were really stretched it was great to know someone was nearby if you needed something. And a great help if I lost my buzzer. Which happened a lot in the early days. The ward has a really supportive atmosphere. Much improved by the complete lack of visitors which meant we all leant on each other. Also we all commented that it was easier to winge to each other as we didn't want to worry family too much, but could be completely honest with each other. A bit like this thread!

I’m feeling really good thanks @SandysMam my HB is a bit low (I had some iron so it’s going up now) but even with that I have so much more energy. It’s amazing.

That sounds really nice @ShinyHatStand I can see the positives of being with others but I did like the privacy of having my own room. I’m a bit anti social though!! My only outstanding question is about whether your pre transplant clothes fit. I can do my jeans up but they’re a bit snug over the wound.

I can't really help with clothes sizing as I've lost masses of weight post transplant as I'd got uncomfortably fat pre transplant.

@Sandysmam I think you are right there is a lot of shock to get over and I think I am still in shock this is happening. So glad to hear you describe it as pretty much normal! Are you managing school runs?

A few different hospital experiences then. I too would prefer privacy. In real life I hate talking about kidneys and can't cope with people asking me 'what are you in here for then?!'. When I was imprisoned on the maternity wards I was the anti social person who kept drawing the curtains! If there is wifi I would pass the time on mumsnet!

Really admire your weight loss @ShinyHatStand have you always been a bit of a gym bunny? I really want to get in shape but my goodness its so hard! @OrganTransplant123 let us know your findings with the waste band, fingers crossed the swelling goes down.

Definitely not a gym bunny. I played some sport in my youth and had a short cycling commute to the train station for many years, but have always hated running and the gym.
Immediately after surgery while I was still off work going walking kept me sane. I obsessively logged my exercise on Strava and made sure I went out twice a day every day regardless of the weather. 7 weeks after transplant the consultant encouraged me to get on my bicycle. I've cycled over 5000 miles this year
I've recently taken up running, which I don't really enjoy, just to make sure I don't lose too much of my fitness over the winter.

that post sounds really showoffy. sorry.
But without being too evangelical, I've learned so much this year about how fresh air and exercise impact on my mental wellbeing. Being off work allowed me to notice how strongly my mood was linked with being outside and sunshine. And being so unwell last year has given me a new found respect for my body - I really really want to keep it working as well as I possibly can.

5000 miles is amazing!! Definitely keep the fitness up. Strava is the way forward it seems

We could have a "Rubbish Kidneys" club on Strava!

Can I ask with all this talk of fitness, do you need to be a certain BMI to be considered for a transplant?

@ShinyHatStand this is exactly the right place to show off!! You are amazing and should celebrate yourself!! I am walking loads still and agree it is so important for mental health. I want my heart and lungs to be in good Nick for the transplant.

@PineappleSun I think me and @OrganTransplant123 had to gain a bit of weight to go on the list, I should imagine there is an upper bmi too although not sure what this would be.

@queenofwobbles…school run, cooking, washing, shopping, bog scrubbing (alas!!). I am doing it all! I have more energy now so things are easier. Currently sitting with my youngest on the bedroom floor who won’t go to sleep without me after bath, bed, multiple stories! You will still be able to parent, my biggest fear of all.
Don’t get me wrong, I would much rather not have to do it and sure if I am lucky enough to get a kidney I will think how did I do that? But this time last year I honestly had days where I thought I would be better off dead then on dialysis. I can’t believe I felt like that now.

Just wanted to wish everyone a Happy Christmas in advance, I have just stocked up on cheese so ready for my telling off for high phosphates in the new year

Thanks for all your support this year, I am really proud of how this thread has grown and the friendships that have been made as a result.

Have a good one everyone, wishing you all healthy filtration (in whichever form that takes!!) in 2022 xxx

Merry cheesemas @SandysMam and to everyone else on this thread. It's been a great source of support.

I am going to tackle the supermarket later tonight and stocking up on cheese and wine. Hopefully my lost appetite might return for me to enjoy it.

Merry Christmas everybody! Thank you all for the warm welcome, I hope you all have a wonderful Christmas and a bit of 'time off' from kidney concern!

Merry Christmas from me too and looking forward to a brighter new year.

Good luck with the cheese @SandysMam and hope you get to have lots of treats. Thanks for your amazing post the other day by the way - so glad to hear you are back to parenting and glad you are out of that hole and doing well on it. I hope I can come back and say the same.

Merry Christmas everyone!

Merry Christmas everyone! I’m planning to start on the cheese mountain this evening. I’ve put on almost 2kg since my transplant so may have to embrace a healthier new year!
Thanks for all your support this year; it has really helped to be able to share stuff with people who understand.