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!!

Pity party coming, feel free to give me a virtual slap. Got my MRI results back (had to chase them). My tumours have grown. Feels like the last year of taking immunosuppressants and shielding for almost a full year have been worthless. Have to have more embolisations. I feel so defeated.

So, looking forward, I need to lose at least a gazillions stone before I have to lie with my groin exposed. Cakes are calorie free if you're blue aren't they?

No virtual slaps from me @AdditionalCharacter, just hugs and cups of tea. Sorry to hear that you got upsetting results and sorry that you had the extra worry of chasing them. It's never nice to feel like the system isn't working or has forgotten you. Maybe don't worry about what's in the cake right now. Just eat the bloody cake xxx

I’m sorry to hear that @AdditionalCharacter that’s really disappointing. Have whatever cake you want, you need to get to grips with your news.

Hello everyone.

AdditionalCharacter I am so sorry to hear about your blasted tumours. That's sorry news indeed and I ma sending you whatever sort of vibes you would like best. And Maltesers.

And Snoopdog83 hello - and I understand "Blood Test Anxiety"...I have my 4 monthly tests next week and am already planning meals and exercise (and yes, have gone fr an afternoon slot this time for hydration...last time I got an early one and the results were down)

I have now lost 32lbs in weight and am (for the first time in 16 years) "healthy" on the BMI scale. I wonder if my kidneys approve?

Thanks everyone. I baked some gingerbread and have had a couple of slices. Feeling a bit better.

Well done on the weight loss @FuzzyPuffling.

Sorry to hear that @AdditionalCharacter. Do you continue on the same treatment?

Well done on the weight loss @FuzzyPuffling. I need to lost about a stone but I just can't get motivated. I just want to eat!

Really sorry @AdditionalCharacter . That really really sucks.
Fuckers.

My weight loss has stalled. Maintained for the past few weeks.
But tbh if you'd offered me my current weight when I started losing weight I'd have bitten your hand off. I'm about in the middle of the healthy BMI range. But still super flabby about the midriff 😁.

So maybe I should quit trying to lose for a while. Give myself a break. I'll keep calorie counting for a while just to get a better feel for what I can get away with and not put the weight back on.

Morning all, just seen this @AdditionalCharacter I’m so sorry it was shitty news, sometimes it just feels like a never ending battle. Definitely this weekend eat the cake and wallow and then Monday, get an action plan. We’re all here for you!

Hi Everyone, newbie here. @SandysMam I could have written your posts almost word for word! I have just hit the dreaded low clearance clinic and heading for dialysis or if I am lucky enough, a transplant. I have no idea how to tell work dialysis is looming - I am dreading everyone's shocked reactions and the stigma. No donor lined up so its the waiting list for me. Very worried about keeping the roof over our heads through this mess but I am determined to stay positive and channel the Queen of Dialysis on twitter (although she is on another level and I am the queen of wobbles!). Thanks to anyone who posted a positive story on this thread - there is so little out there especially for young(ish) people juggling jobs and kids along side this mess. I read them in hope! .

Sorry @AdditionalCharacter and others having rubbish times. No words but agree you should eat the cake

Yeas, continue with treatment and wait for the operation. I'm only on half the recommended dose, consultant won't put me on the full dose yet because of covid.

I'm at work all weekend, long night shifts, so I'll at least have something to take my mind off things.

The operation is to maintain kidney function, they'll only remove my kidney as a final resort. It will eventually be removed once it starts affecting things.

Completely understand what you mean @queenofwobbles I’d only told my immediate manager but no one else, not even any friends when I had to start dialysis all of a sudden in January. I hate telling people face to face. I can’t bear it!! I texted friends, that was much easier.

I don’t have a donor either and am just about to go back to work so I’ll see how I get on juggling work, dialysis and children!

Still no word from the transplant clinic. I just want an appointment letter!! Apparently the referral has been made and blood sent off according to the dialysis nurses. I still need to put on another 1.5k but I don’t think that’s why I haven’t heard from them. I ate two lunches today! I’m trying my best!

Hi all
So sorry that so many of you are having a shitty time.

The scariness of waiting for dialysis is very familiar. I'm so lucky that my transplant happened in time to avoid this.

And ditto all the comments on telling people. I only told a handful of people before my transplant as I hated the sympathy and sad faced from the people I did tell. So most people only found out when I was about a month post transplant when I was well enough to feel comfortable talking about everything. It was super weird for them. Lots of very shocked faces! Obviously work people knew I was off work but most had no idea how serious it was. Think they though it was knee surgery or something similar.
And I still haven't done a bit fb announcement so loads of people that I haven't seen in person still have no idea what I've been through.

I'm still doing well,
Ate the biggest piece of cake ever cut, guilt free in the middle of a fairly epic cycle ride today.
Now I really need to go paint a fence but frankly I can't be arsed so I'm faffing about on my iPad in bed 😀

Thanks @OrganTransplant123 and @ShinyHatStand , glad to know I am not the only one. The shock and the head tilts aren't things I can deal with (I spend enough time in shock so don't need anyone elses!).

@OrganTransplant123 I would love to know how you get on with the juggling. I was thinking home HD would be a good option for that but not sure if I have the space or if they would let me (plus am terrified of fistula, needles, all of it!). I hope you hear from the transplant centre soon and you are binge eating cake and other nice things - I imagine it's not as easy as it sounds with renal diets and everything.

@ShinyHatStand its nice to hear how well you are doing! I don't think I can deal with everyone knowing so maybe I need to start moaning about my knee or something - create a decoy in case I am suddenly off work!

@queenofwobbles I’m not suitable for a fistula so am doing home HD with a neckline. You do need space for boxes and the machine but the boxes could be kept in a garage. At first I was just horrified by doing anything with the neckline but you quickly get over it!

I did dialysis at the unit for three months and it was much harder to fit into life- it was an hour away so I spent so much time travelling. Also you have to dialyse on their schedule whereas at home, the idea is that you do it around your other commitments. I can see why some people prefer to go to the unit but home dialysis is much better for me.

Evening all, hi @queenofwobbles welcome! So glad you found us and hopefully have got some comfort from some of the posts.
I feel so sad for you when you talk about feeling ashamed of it! And actually I feel the same! Not so much work as I work for the NHS and am also not very important so no one will really miss me if I’m off but with friends and more importantly, school mums!! I know there will be a point when I will disappear for a bit or begin to look rough and they will comment or gossip or worst of all, TILT THEIR HEADS!!! I just can’t bear it as I am a very private person. BUT I am working very hard on trying not to care and remembering that actually, it might be a passing comment but no one will really dwell on what’s going on with my life as most people really just focus on their own.

Let’s be strong and proud of being so bloody tough and amazing and try not to give a shit!
I do however frequently wish bad things would happen to some of these people though which either makes me a) human or b) an absolute cow but I figure this group demands honesty and it feels good to get it out sometimes!! Nothing major but just something to take the shine off their seemingly perfect lives (which I know probably are not perfect but when your kidneys are slowly killing you, it feels like everyone else is having a ball!).

I have to say I've had nothing but kindness since being open about my illness. And amazement. But no hint of unkind gossip.

Only downside is that everyone seems to desperately want to believe that I'm "fixed". They don't want to hear about it all still being a bit shit. They want to tell me how well I look and how inspirational I am (🤮🤮🤮🤮🤮).

I hope we don't make you feel like that @ShinyHatStand. I'm well aware we often turn to you for the glimmers of hope - but I'm sure you need to express that you have dark days too. xx

Nah. You guys are fab.

Hello everyone, I’ve just checked back and it’s been 6 months since I was last on this thread. I think I was trying to avoid thinking too much about my dodgy kidneys.
So I was activated on the transplant list on 23rd December. Had a couple of middle of the night phone calls almost immediately from an unknown number (this is how it comes up should the hospital call after hours) Turned out to be a pervert and I made the mistake of telling him how pathetic and disgusting he was instead of hanging up straightaway. He apparently enjoyed this and phoned several more times. Each time I felt I needed to answer just in case it was The Call, of course it was him each time. Still makes me cross when I think about it. Phone company and the police apparently couldn’t do a thing and eventually he just stopped calling.
In other news, my surgery to fit the PD catheter is Wednesday. I’m quite apprehensive and dreading starting dialysis. I thought I was fine about it but the closer it gets, the less keen I am. I’m sure I’ve still made the right choice for me but I’m sad and miffed that I need to do any of it.
I don’t want my life to change

Sorry for the pity party (this is why I’ve not been on here for a while) I hope everyone is doing ok. I love hearing people who have come out the other end of this. Gives me hope that there is life on the other side.

Oh HairyPotter how horrible about the phone calls. Some people are just out and out shits. I wish plenty of karma on them.

My kidneys are on much better shape than many of you ( for which I am very grateful, and applaud your steely attitude, all) and I "suffer" most from the total lack of understanding/ interest/ acceptance that I have a problem at all. Doesn't show? Doesn't exist. Grrr....

@SandysMam I could cry for finding this thread. It really gets me when google results, even various charities, go on about how debilitating it can be - it can feel like there is no hope! I know what you mean about everyone elses seemingly perfect life. Try and remind myself it can always be worse. You are right - we should be out and proud!

@OrganTransplant123 glad it is working out for you at home. I am not sure how good or bad my unit will be for options but you give me hope I can push for something that works.

@HairyPotter also wishing karma on the low life! I dont have any words of wisdom but I get how you must feel. Good luck for the op!

Hi @HairyPotter I have been thinking about you, hoped that maybe you had had a transplant or held steady and not needed us so am sorry to hear you are ready for dialysis. Hopefully though you will start to feel better once you start it. I will be doing PD too, so many things about it sound scary but hopefully once up and running it should be ok. Will be thinking of you. As for the prank caller, invest in a whistle if he starts again! What an arsehole but I guess he can’t know the reason your phone is not on silent at 2am. I jump everytime mine rings even though I know realistically it will be years yet probably!

Hi all

@HairyPotter how revolting to get those calls. Words fail me. Thank goodness they stopped. Good luck with the op. I was planning on pd before I crashed and ended up with a neckline. I’m sure we all know what you mean about not wanting your life to change. I’d love for all this to just disappear!

I don’t think anyone wants to feel that people feel sorry for them. I’m just v private and don’t want to share the ins and outs with everyone.

Yes that must be frustrating @FuzzyPuffling similar to what @ShinyHatStand was saying about post transplant too. If you look ok then people think you are ok!

Thanks everyone, lovely to have people who know how you feel. In the interests of looking forwards, as we needed a new larger shed to store the mountains of boxes and assorted gubbins that come with PD we have gone for a garden house instead. My feelings were once this is all a memory, it’ll be lovely to have a summer/garden house to look out at instead of an ugly shed.
I’ve also set up a savings account with my friend and we plan to spend a month touring South America once I’m fully fit again. Might never happen but I’ll give me something to aim for.

I was thinking about a shed for the dialysis stuff, does it have to be kept at a certain temperature do you know? A garden house sounds lovely!
South America sounds amazing, it will happen for you, so get saving!!!