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Rubbish Kidneys Support Thread

996 replies

SandysMam · 11/07/2020 11:43

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 Grin) 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!!

OP posts:
FuzzyPuffling · 14/04/2021 21:27

Oh the heaven of a bra that fits.
And continues to fit at the end of the day!

SandysMam · 15/04/2021 06:30

@ShinyHatStand oh my goodness, not gloaty at all! It honestly helps so much, seeing the other side and knowing there is hope for me. I am thrilled for you!! Hopefully cycling should be even easier in your new bra without anything unnecessary bouncing around Grin

OP posts:
nailsathome · 15/04/2021 10:02

@ShinyHatStand congrats on the bloods and the new bra. I've given up with wearing them but my boobs are small enough for it not to cause much of a problem.

@AdditionalCharacter how are you feeling? Did they give you a timeframe for results?

Good morning everyone else, I hope you all have a fabulous day today.

MissKittyFantastico84 · 15/04/2021 12:26

Wonderful news @ShinyHatStand! Don't ever worry about sharing good news with us! Like PP have said, it's so reassuring to have positive news and good outlooks. Plus, we're just happy for you! 😁

I've slowly been weaning myself back on to wearing my bras after 18 months of crop tops LOL. Those first couple of days it felt like I was wearing a cage!!

xx

ShinyHatStand · 15/04/2021 13:13

Thanks all. You are very lovely.

I'm sticking to sleep bras and sports bras for now. They're a bit more forgiving if my size changes any more. Braless is definitely NOT an option!

AdditionalCharacter · 15/04/2021 20:36

Feeling ok today, thanks. No timescale for results, my consultant only works at the hospital three days a week, and he needs to discuss with surgeon and other nephrologist before I'll know. Could be weeks.

I tried wearing a bra last week, it wasn't a great idea. I've lived in crop top type bras for the last year. I really need to get into a shop and buy some proper bras. Where did you get yours from @ShinyHatStand

FuzzyPuffling · 15/04/2021 20:44

I have a bra admission to make.

I've got into non wired ones and the shop with the best selection and cheap prices ( and bloody comfy and supportive bras) is....

Bon Prix.

Sorry. Not sorry.

AdditionalCharacter · 16/04/2021 12:39

Oh dear @FuzzyPuffling I think you need to go over to Gransnet Wink

FuzzyPuffling · 16/04/2021 12:47

@AdditionalCharacter

Oh dear *@FuzzyPuffling* I think you need to go over to Gransnet Wink
Ha ha, I know! At least I won't be troubling Style and Beauty with that little gem!
AdditionalCharacter · 16/04/2021 13:01

Very true!

MissKittyFantastico84 · 16/04/2021 17:45

Evening all - I hope you don't mind but I'm having a wobble and I was hoping for some kind words from you post-transplanters.

I'm really starting to get freaked out about the side effects of the post-transplant meds. I know it's jumping the gun but I am a bit of natural worrier.

Hair loss, moon face, weight gain, insomnia, osteoporosis, liver problems, the threat of cancer... I just don't know how I'll cope. And I keep having dreams about it. It's really upsetting me and I don't have anyone to talk to about it.

Sorry guys. Wish I could keep it on the bra topic! xx

ShinyHatStand · 16/04/2021 18:42

Hi @MissKittyFantastico84
I can only speak for myself, but 7 month post transplant...

No moon face
Lost 1.5 stone because I have more energy so can exercise more and don't eat so much because I'm not miserably sitting on the sofa.
Some hair loss but not enough that anybody but me would notice. Hair generally in great condition
Hideous periods for 2 months but now back to normal

Basically I haven't felt this well in at least 5 years.

FuzzyPuffling · 16/04/2021 18:58

No words of wisdom MissKitty as I'm not a TX person, but lots of sympathy. Side effects of treatment are the pits as we are supposed to be so damned grateful for getting treatment anyway!

SandysMam · 17/04/2021 19:10

Hi Miss Kitty! I have a few of the same worries, the transplant nurse said that a lot of post transplant weight gain is literally because people feel so much better they actually have an appetite so if you are controlled about it, weight gain can be minimal. Also, moon face isn’t as bad now as they try to reduce the steroid doses early on. It is difficult though, as you are supposed to feel so thankful that it seems vain to worry about looks in the face of a life saving Op but looks are important as is self esteem!
Hopefully drugs are improving all the time in terms of liver damage etc and they will be very cautious about skin cancer and probably whip off any moles etc that start giving you problems. Might be worth wearing an SPF every day from now on?
Looks have never been my strong point so I guess I have less to lose Grin
Us kidney gals do have challenges that others don’t even have to think of though and that is a grief in itself, however it might be that some of the things we do keep us looking better then our peers. I don’t know about you but I haven’t touched alcohol or fags since I was diagnosed and I eat a much better diet then I think I would had I not had the problems I do. Our bodies are temples!
Try not to get overwhelmed worrying about what is to come. Some of it you cannot change so worrying is pointless and some of it won’t be as bad as you thought. You got this xxx

OP posts:
ShinyHatStand · 17/04/2021 19:30

@SandysMam is very wise. In the first month or so my weight was increasing rapidly as I was hugely enjoying food for the first time in years. And people kept buying me cake. It wasn't the drugs making me fat it was greed 😁
So it wasn't too tricky to get it under control.

And they stopped the steroids within a few weeks.
I routinely wear high spf moisturiser and they monitor liver function every month atm.

I'm my experience life really is so very much better post transplant. In just about every possible way.

SandysMam · 17/04/2021 20:02

Thanks Shiny, I got a bit carried away there given that I, you know, have never actually had a transplant Grin glad I didn’t come out with a total load of tripe!! I am so pleased that life is better, you honesty sound like the most positive amazing person!

On another note, I keep smiling at people when I have my appointments at the renal unit in case it is any of you lot but obviously I have a mask on!! If you see some weird woman squinting her eyes at you, it could be me Grin

OP posts:
MissKittyFantastico84 · 17/04/2021 20:30

I knew you lot would cheer me up...

Thank you, honestly, for all your reassurance. Both of you, pre and post kidney swaps!! You give excellent advice @SandysMam Grin

I'm always the one in my unit trying to throw friendly glances in every direction - I probably look like that person you tend to avoid on the bus. You know, the one that's giving serious SIT NEXT TO ME vibes.

I hope it's not too outing for me to say that my unit is based in very central london. If that matches any of you, perhaps we have crossed paths... xxxx

Wishing you all beautiful and relaxing Sat nights xx

ShinyHatStand · 17/04/2021 20:32

I've not been physically in the hospital for many months so it's not me your smiling at. But please keep on smiling I've been cheered up on many a gloomy day by a smiling stranger.

OrganTransplant123 · 18/04/2021 13:22

I did have a moon face although was v thin everywhere else! It only lasted a few months. I got married 8 months post liver transplant and I don’t have a moon face on the photos! Honestly, it’s normal to fret about what things will be like but it’s a new lease of life and you easily get into the routine of medication and don’t really think about the side effects etc.

I can’t contribute to the bra chat. I’ve been wearing really soft crop tops since I had my neckline fitted. I really need a bra fitting but I can’t see how I can get a good fitted bra that I can fit the neckline access bits in!

My big news is that I’ve started home haemodialysis! I’ve only done one session and the nurse is back tomorrow so I can have another run through with them there. I’m feeling ok about it and much happier than when I was travelling to the unit. Still no news from the transplant centre though.

SandysMam · 18/04/2021 14:08

Ah that’s great you are at home now @OrganTransplant123, hopefully you will get the hang of it quite quickly and it will fit into your life well. Did you put the weight on you needed to qualify to go on the list?
Keep chasing them, I think things are so slow post Covid, I had to chase my final few work up bits up!

OP posts:
OrganTransplant123 · 18/04/2021 14:53

I’ve not quite got to the required BMI but I’ve put on 3kg since Jan and am only 1kg off a healthy BMI so I got the impression from the nurses that the referral would go through. I’m putting weight on slowly but surely. I’ll double check with the nurses tomorrow.

ShinyHatStand · 18/04/2021 14:56

@OrganTransplant123 don't know if it would help with the bra fitting issue but I has a fab zoom appointment with a bravissimo bra fitter last week. If you were happy to show her the neck line she might have useful suggestions.

SandysMam · 18/04/2021 16:19

On another note, I am really enjoying the how old am I threads that keep popping up, some of the answers are making me die if anyone wants some light entertainment!

OP posts:
OrganTransplant123 · 18/04/2021 16:26

I didn’t realise you could do a zoom bra fitting, that’s a great idea thanks @ShinyHatStand

I’ll have a look at those @SandysMam I usually just skip over them wondering why anyone would want to put up a photo of themselves!

SandysMam · 18/04/2021 17:07

I know!! I can’t think of anything worse than 12 pages of people commenting how bad my crows feet are Grin

OP posts: