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!!

Hi everyone, sorry haven’t checked in for a while.

Hopefully they can get you on the transplant list ASAP @OrganTransplant123, putting on weight sounds like a dream come true but it actually must be very difficult, especially if you feel a bit rough from the dialysis. Have they given you a diet to follow to help or just expecting you to get on with it?

I am just so exhausted! Energy levels super low but expectations still high and have to get on with everything, some days it feels like such a struggle. I reckon my health would be much better if I could just rest when I needed to for as long as I needed to but always something that needs doing and still have to work etc!

Thanks @OrganTransplant123. I'm a bit dubious about the suggestion of partial removal, considering I was told it as never an option.

Putting on weight must be hard going if you're not feeling hungry. How much do you need to gain to be put on the transplant list? Maybe add cream, butter, cheese or chocolate to everything. I'm sure that's how Rene Zelwegger did it for Bridget Jones diary

Hope you're energy levels increase soon @SandysMam, don't be so hard on yourself, you've got a genuine reason for not having much.

Hi guys
Sorry that so many of you are having a shitty time.

Life is slowly returning to normal for me. Working more. Back on the treadmill of life. Struggling a bit with all the mundane adulting after being in my recovery bubble mindset for so many months.

Thanks @SandysMam and @AdditionalCharacter I’ve got 1.5 kg to go till a healthy range BMI but they want me to put on 6kg in total. I’ve got a diet sheet that suggests eating everything buttered with cream!

I sympathise on the high expectations @SandysMam Try to take as such time to have a rest as you can. Delegate or try some easy in the oven or ready meals to take the strain.

@OrganTransplant123 sounds like a great plan to have scones with jam and cream every day

Oooh mine would be toast with thick butter!! Do you have to watch your salt etc or are you allowed quite a broad range?

I love hearing about you getting on with life @ShinyHatStand it makes me feel really hopeful!

Thanks @SandysMam
Tbh I'm finding the mental adjustment harder than the physical recovery. Particularly as everyone else now thinks of me as completely fixed. Which I'm not.

But in better news, I might have cycled 60 miles today 😮

I do have to be careful of salt but I don’t have to worry about potassium levels anymore so that’s good @SandysMam

Yes, I know what you mean about the mental adjustment @ShinyHatStand I found that after my transplant everyone thought I was fixed and forgot to be careful about visiting with colds etc. It might have just been a cold to them but on immunosuppressants you have to be careful. Please tell me that you live somewhere flat? I can’t imagine ever cycling 60 miles!!

Wow @ShinyHatStand 60 miles is impressive! Do you have good cycle paths where you are?

Thanks both. It is indeed super flat. I'm not good on hills.
And there are plenty of relatively quiet roads.
Also plenty of arsehole drivers too though 😂

I've just been for an ultrasound and everything looks normal. Repeated blood test shows gfr is still 56. What happens next? Would ckd definitely show on a scan?

60 mile 😲 don't think I could even do 60 yards, been ages since I've rode a bike. Probably since I was a teenager. Well done!

I’m not sure @nailsathome there are so many different diseases and conditions that cause a decrease in kidney function that I would assume that even with a good ultrasound a low eGFR would still need investigating. That said, eGFR can drop and then go up again after an infection or illness. Some people also live with a less than ideal level of kidney function that doesn’t ever progress to complete loss of function.

@nailsathome I’m not entirely sure but if I could give one piece of advice it would be to try not to worry until you get to say eGFR 25 which will probably never even happen.
I wasted so much time with much better kidney function (now 15%) worrying and fretting and I wish to God I hadn’t. So easy for me to say but try to let the doctors do the worrying and in between, live life and enjoy it. I have had a lovely day today and I used to frantically worry about reaching 15% when my eGFR was 30! I wish I could go back and tell myself that even when I did I could still have happy times!
Hope that makes sense, I am rubbish at articulating myself so hopefully you get what I mean!

Thank you @SandysMam, it's just frustrating knowing whether it's something I need to worry about or not.

Got my MRI next Tuesday, quicker than I expected. They phoned to make the appointment. Makes me feel slightly nervous.

That’s good @AdditionalCharacter it saves you spending ages worrying about it all. Hospitals seem to get getting on quite quickly now with scans and procedures now the heat from Covid has died down a bit.

@AdditionalCharacter I'm glad you've got an appointment so quickly, I hope it goes well

Ah that’s good, at least you will know. Try to forget about it over Easter, easier said than done! Hopefully the chocolate will help...

Thanks. I think I'd have been fine had it been a letter, but because they phoned to arrange it, makes me feel that it's urgent. But then I'm always one not to make a big issue out of my own that would be huge for others. Will have to get a taxi there and back, the contrast dye always makes me a bit wibbly for an hour or so.

Maybe they are prioritising it because you have had pain rather than them prioritising it because it looks medically urgent, if you see what I mean @AdditionalCharacter

Probably. I'm just so fed up with being in constant pain and not being able to sleep. I'm tired and grumpy.

Happy Easter everyone. I hope you've all had a good weekend.

Hope all goes well today @AdditionalCharacter

Hope everyone had a good weekend.

Scan went fine, thanks. Just waiting to hear from my consultant after he has spoken to the relevant teams. They had a new rule in the MRI department that you have to wear a gown, previously you could wear your clothes as long as no metal. I even have a special bra with no metal for MRIs. Glad I shaved my legs in the morning.