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!!

Ah thanks Hairy! I really needed something positive and your post is perfect. Thank you.
I need to give myself a good kick up the arse. My consultant once said it is the best worst thing you can have as whilst it is really serious, there are treatments.

Krakow sounds amazing, I would love to go!
Go, and have a lovely time.

Kidney Beam is a new fitness and health platform for kidney patients. Think it is run in conjunction with kidney care uk. There is a free trial, might be worth a look but £20 just seems a bit extravagant for something online when there are free fitness apps etc.

When do you next have bloods? Hope you stay stable. I’m not due any for a month which is a nice feeling.
I also do a thing where I don’t check them online. I just leave it until my consultant appointment. It is quite liberating really, I do what I need to do then put it in the hands of the doctors. Like you say, it is out of our control!

Thanks again.

Ah thanks. As soon as I hit post, I worried that I sounded unsympathetic and cold hearted. Honestly didn’t mean too so I’m glad I’ve not offended you.

I’m used to people telling me how unlucky I am to have it but I really believe I’ve been lucky that I’ve had it for over 25 years without issues. My disease had a 20% chance of complete kidney failure, so I am the one in five. Someone had to be I suppose.

My next bloods are Wednesday, my consultant will probably do another phone appointment early the following week. I’ll confess that I’ve never got round to setting up patient view so I never know what my levels are until my appointment. Are you quite close to your dialysis unit? Mine is a 35-40 drive away so was a fairly large factor in choosing PD. My transplant centre will be Queen Elizabeth in Glasgow (if I’m lucky enough to get one)

I’m really looking forward to Krakow! I was supposed to go to Budapest at the end of March but Covid has other ideas! Change of plan and Krakow it is. I think that’s the main thing I’ll miss initially, absolutely love my holidays. I’ve managed to squeeze in a couple of big trips with the excuse that if I don’t do it now, I’ll never be able to go. What about you? Will you still travel and work if you’re able?

Not offended at all, really grateful you are taking the time to post although think we might have scared everyone else off
I am feeling better today, stronger and more determined.

I don’t know re continuing work etc, I am quite young (ish!) and have 2 small kids, I think there will be a lot of forcing myself to do stuff for the children. There are already days when I am exhausted and have to plaster on a smile. I am public sector so get good sick pay which will help. I guess I just have no idea how I am going to feel. I have read that end stage feels like the worst hangover you can have. But then does dialysis make you feel better then that? It is all so unknown. Best case scenario for me would be getting there and it not being so bad after all. Not expecting it to be fun, but am imagining hell on earth so anything better than that would be a bonus!

My brain struggles with logic though...when I go to my appointments at changeover time, the patients waiting for HD are chatting, often laughing and while they look rough, certainly don’t look like they are about to face the torture chamber if that makes sense? One old man even said to me that his wife calls it his club and he looks forward to coming!! He was about 100 though!!

I know someone who had a transplant who had over 20 years of fabulous holidays before they died, unfortunately they died before I was diagnosed so I was never able to discuss it with them, but they certainly did a lot of travelling.

My nearest unit is about 15 mins away, I feel like I want to do Unit HD as I hate the thought of my family seeing me doing anything medical. I worry about scaring the kids and putting my DH off me! Am also a bit squeamish so just not sure if I could manage it myself!

There is a good book in Amazon called Staying Alive by Jan and Alan Cooper. It is loads of short stories about kidney stuff. It gives me a lot of comfort and strength, def worth a down load if you have a Kindle.

Glad you're feeling a bit more positive today @SandysMam.

I also get the feeling of impending doom, don't think lock down and shielding has helped that. I feel a bit of a fraud shielding, as was managing fine at work. My work are lovely though, I'm lucky.

I feel like I can't enjoy myself with my DC sometimes. We love going to theme parks as a family, but I can no longer go on any rides, I just sit on the sidelines eating doughnuts and being bored. Plus I still have to pay entry which is crazy just to walk around!

@AdditionalCharacter have you thought about writing to the attractions and explaining the situation? I bet they would give you a free pass. Saying that, we all ended up paying to walk round Lego Land...my eldest got the fear and wouldn’t go on a single ride!

I think once you suffer from an illness, you become so aware of your own mortality and that is with you for life. I do envy those who don’t have that awareness. But you also get to appreciate life. I bet your kids just love you being there to watch them on the rides! And someone’s gotta hold the coats...!!

Ah yes, I usually end up holding coats and a giant stuffed toy they always seem to win.

Hope your bloods went ok yesterday @HairyPotter will keep everything crossed for stability for you.

I have felt ridiculously thirsty today, does anyone else get that? Feel like my kidneys are throbbing too!

Not a patient but worked with kidney patients for many years and there are a few things that occurred to me:

Your unit may have a social worker and a psychologist - both can be v helpful for adjusting to end stage. Worth asking if it hasn't been mentioned.

The aim is for people to be as well as possible on dialysis. Haemo can take some adjustment because it's a pretty drastic process, PD can be slow to get started. There are pluses and minuses to both. In terms of replicating your kidney function overnight haemo 6-7 days a week is the absolute best you can do. You don't have to start in centre dialysis, it is possible to train for home straight away but that is a big ask and I would advise starting in unit but being clear from the start you are aiming for home. The unit I've worked with supply a small shed for supplies if needed. You can also ask what self caring options they have and try and put your own needles in as soon as you can. It's v empowering for many people and helps with planning for home.

You can go on holiday. It takes a lot of planning and restricts your choice of places but every year hundreds of patients get their holidays. I would suggest going uk first. There's a lovely private unit in the lakes that nhs patients can go to and another in Norfolk, lots of others too but those are the two that came to mind first.

I sent a patient to a Swiss unit once, fab service and he got a free penknife! There are rules about funding abroad and we aren't completely out of the woods re Brexit impact but more likely than not by the time you ladies need it it will be sorted.

Patient transport to units generally sucks, lots of waiting etc. If you are able to drive that's good but some people don't feel well enough. If somebody can give you a lift at least one way it makes a lot of difference.

Dietician advice is essential for managing your fluid levels and blood chemistry. If you haven't met yours yet, ask your service. They are lovely people with the knowledge you need to navigate quite complex requirements.

Hello!

Not sure how I've missed this thread before but as someone else who is renally challenged I would like to join

I'm fairly well at the moment - gfr of 16 and had been told I was a priority for a live transplant if I can find one, sadly everyone who has come forward so far has some sort of medical issue so won't be able to do it! I'm guessing I'll end up on dialysis now but hopefully I can have a transplant at some point!

Also 100% yes to the feeling thirsty all the time and the bruising! Drives me mad!

Thanks @pandafunfactory super helpful to have insider info! I always ask about diet but my consultant checks my potassium and phosphate and says it’s fine so no need to see the dietician but I think it would be helpful. I try to follow a healthy diet, have given up red meat. My main downfall is crisps!! I am like an alcoholic with them, I know they are so bad for me but every now and then I fall off the wagon!! Before I was diagnosed, a Chinese would leave me puffy for days. I don’t eat anything like that now! I will definitely ask at my next appointment though.

Hi @IllustriousToad welcome! Glad you are fairly well, that’s so nice that people came forward for you though even if no one could do it, you must be a very special person!
I feel so shit about all that, the transplant coordinator suggested I try to “drum up a donor”, even suggested a Facebook appeal! I can’t bear for people to know I am sick, I feel ashamed of it doesn’t help that someone asked if I was a drinker (I’m not) and was that what caused it. Like it was my fault I got this.

So good to hear so many positive people on this thread though, it really does help. Hope I’m not too wingey, I like to get it out here so I can be positive in RL

@SandysMam yes I have felt uncomfortable about that too. Some of my friends have encouraged me to put stuff on social media etc too to try and find someone who can donate but I'm just not comfortable doing that. So I totally get how you feel.

Have you done all the tests to get onto the deceased list? It feels odd to hope you get a match - but I guess it's our best shot!

I haven’t yet @IllustriousToad, haven’t dropped below 20 yet but noticing the symptoms more now so don’t think it will be long. So are you officially activated on the list now?

I like looking at people who have had transplants in the media..my favourite is Prince Daniel of Sweden! He looks so happy and like he’s really taking the second chance at life he has been given and looks so healthy. But then that is probably easier when you are a multi millionaire who doesn’t have to take the bins out

@SandysMam

Hope your bloods went ok yesterday *@HairyPotter* will keep everything crossed for stability for you.

I have felt ridiculously thirsty today, does anyone else get that? Feel like my kidneys are throbbing too!

I wake up every morning with throbbing kidneys. Took months to get my consultant to agree its the tumours because he kept forgetting what size they were. He is useless, and he's meant to be the top consultant. When he eventually agreed with me, he says it's because the tumours are pulling on my kidneys and stretching the tissue.

It's eased off slightly since I started taking chemo tablets, so I'm hoping they're doing the trick. I've not had codeine or oramorph since mid June now, apart from a couple of days, whereas I was taking 60mg of codeine and topping up with 5ml oramorph.

I used to be able to feel the 13cm one when I lay in my right side, like you can feel a baby in late pregnancy. Can't feel it as much now.

Regarding drumming up a kidney, my friend was doing it for her husband before she matched, and she got nothing but support from everyone on FB.

I don’t think I could put a post on social media asking for a kidney. It’s such a huge thing to expect of anyone. My dh is still being tested and I know deep down, he would rather keep both his kidneys so can’t imagine asking anyone else to give up one of theirs.

Yes to the thirst. I’m constantly parched and could easily drink all day, (if I didn’t have to keep running to the loo)

In a moment of utter madness, I’ve booked a flight to Amsterdam on Friday! DD1 was feeling a bit low (3 of her holidays cancelled because of Covid19) and I had a few days off work so thought I’d cheer her up. As soon as I hit ‘book’ I realised I was quite mad!

Ah I'm jealous @HairyPotter, a break in Amsterdam sounds lovely! I'm trying to make the most of the next few weeks as I have a feeling we will be in for a long and difficult winter! I went to the pub yesterday and going out for dinner shortly. Can't wait!

Agree on the Facebook thing. Sometimes I think about putting some more general kidney posts talking about my experience with ckd primarily to raise awareness, and even that makes me feel awkward!

How has everyone been getting on this week?

Hi everyone, sorry the thread dropped off my I’m on box so I just assumed it had died a death and no one posted after me!

Hope you are all ok (if anyone sees this!) did you get to Amsterdam @HairyPotter? Hope you had a good time if so! I would love to go!

Been feeling a bit brighter this week, have found another kidney role model, a Ciara Jean Roberts who does Yoga stuff on Kidney Beam (I joined, it’s free until November for kidney patients) and also has a good Ted Talk on YouTube which was really inspiring. Worth a watch if you need a bit of motivation to keep going.

Hello! Yes it dropped off my threads as well and I couldn’t find it again.
So, yes I did go to Amsterdam (probably not wise given the current pandemic but after changing my mind countless times, we went. The weather was glorious, really hot every day. Social distancing was easy enough as everything was well laid out with plenty of signs/hand sanitiser everywhere. We managed to do most of the main attractions as well as a wee day trip out to Volendam and

I’m glad to hear you’re feeling a bit brighter. I might have a look at kidney beam if you think it’s worthwhile. When are you back at the hospital? My function is back down to 15% and my consultant feels it’s almost time to go live on the list. Not sure how I feel about that? It’s feels rather too real now.

Hi Hairy, so glad you went, you make me want to be a bit braver! I let my kidneys hold me back so much!
Sorry to hear you have dropped, I have too, had the talk about getting started with everything, will chat with the transplant team and dialysis team in the coming months. I feel the same now it is getting real. I remember crying the day I had an eGFR of 28. Jesus I’d skip down the road like a lottery winner if I had that now
There is a thread somewhere else about positive things people have said to you, some of those have been really inspirational, will try to link in a mo... my favourite one so far is to stop focusing on what might go wrong, but focus on what might go right.

What I am holding onto is that actually, we might actually feel better once we start treatment, whatever form that takes. And yes, it’s gutting that something as simple (or not!) as cleaning our own blood, that everyone takes for granted is going to become a huge part of our lives, but it’s happening so we have to get on with it.
I am noticing so many more symptoms now, freezing cold, could happily sleep all afternoon, and maybe, things will actually improve. I am trying to think of things I am looking forward to about dialysis, or at least things to make it more bearable. I want to watch the entire lot of game of thrones. I never did the first time round, never had time so that should kill a few sessions!

I’m still trying to keep active though and always feel better once I’ve had a walk. I get confused about diet though, my consultant says just eat normally for now but I then worry that normally is not right! Do you still eat tomatoes etc?

I’m glad I met you on here, definitely feel less alone.
I’m also working on feelings of shame around this. I feel embarrassed to be sick, like everyone will be pitying me and thanking god it’s not happening to them. I am proud to be strong and getting through it! I wonder who I might be if I hadn’t had this? Maybe a selfish arsehole!

www.mumsnet.com/Talk/_chat/4005264-What-did-one-person-say-to-you-that-changed-your-outlook-on-life

That was the inspiring thread, worth a browse!

@IllustriousToad how are you doing?

Hi
I have name changed for this thread as may be pretty identifying.

Anyways, my DH is the renally challenged one really. He had a transplant 10 years ago but it's now failed and he's back on the dreaded list. He does peritoneal dialysis overnight for now.

Happy to chat and answer questions about this crazy journey. It's can be such a shock diagnosis. And I think there is a big mental barrier to realising that even transplant is just another treatment, not a cure.

@SandysMam

Also, at my unit they sometimes don’t start dialysis until as low as 8, although I imagine you must feel pretty rubbish by then!

DH started at about eGFR 10 both times. But the last bit say 15 down to 10 seems to happen quickly for him and it's only really enough time to have the catheter put in.

The first time he was due to start in the January but ended up being called in to start on NYE due to dodgy bloods. That was fun

@AdditionalCharacter

Glad you're feeling a bit more positive today *@SandysMam*.

I also get the feeling of impending doom, don't think lock down and shielding has helped that. I feel a bit of a fraud shielding, as was managing fine at work. My work are lovely though, I'm lucky.

I feel like I can't enjoy myself with my DC sometimes. We love going to theme parks as a family, but I can no longer go on any rides, I just sit on the sidelines eating doughnuts and being bored. Plus I still have to pay entry which is crazy just to walk around!

Not sure exactly what you mean regarding attractions but I can say for sure that you can get disability passes at places like Disney. We went to Disneyland Paris last year and got a pass which meant we skipped to the front of all the queues. It was seriously amazing and meant we could have a brilliant holiday!

Regarding work options, it's definitely worth considering peritoneal dialysis if you are quite young and already have a busy life.

You can do it overnight. It does need doing every night but at least it doesn't interfere with the days so much. It takes about 20 mins to set up the machine before bed and then is works it's magic overnight.

DH works full time and we have 2 young kids. Being truthful, I do 90% of the child and house work. He enjoys his job and it's important to his self esteem to work. He does need to rest a lot outside of work hours but we still manage to have a reasonable family life.