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Rubbish Kidneys Support Thread
993

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!!

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WhoWants2Know · 11/07/2020 11:47

My exH was diagnosed with CKD last year and was really shocked at how quickly he went from a hard working, active lifestyle to not being able to climb stairs or stay awake the full day. His seem to be fluctuating now, so there are good weeks and bad weeks.

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SandysMam · 11/07/2020 11:52

Hi @WhoWants2Know people don’t realise that the kidneys play a huge role in making red blood cells, so the associated anaemia which has to be treated with the hormone erythropoietin can make you exhausted. Iron tablets won’t work for this type! Treating the anaemia really helps those symptoms so make sure your ex (if you still give a shit about him Grin) is getting the right medication from his renal unit.

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tobee · 12/07/2020 01:11

My Dh got kidney failure as result of malignant hypertension nearly a decade ago. After a hospital stay he went on dialysis. Haemo for a few months and then peritoneal for 7 years. Which suited him very well, he was able to carry in working pretty normally.

He finally got his transplant a couple of years ago. We hoped that would mean he would be ok for a good few years but, unfortunately, a dormant virus reactivated and was detected about 9 months later. He had to return to haemo just as lockdown started. So 3 x a week in centre. Talk about terrible timing.

Currently, not sure what's going to happen. The dialysis may just be temporary to help his kidney while he clears the virus. Or he may be back to where he began.

Fortunately, he's pretty healthy in other respects, (as much as he can be).

Also, although he couldn't go on peritoneal dialysis again, he might be able to train to do haemo at home which could be done over night and be more gentle.

I'm sorry that you are going through this. It's very easy to feel other people don't get it I agree. I don't think people understand about shielding either. Although I was very worried at the start of lockdown, I now feel that "well we're all alive" at the end of each day as the best attitude we can manage.

There are lots of active online support groups in America but not many here.

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SandysMam · 12/07/2020 07:45

Thanks @tobee sorry to hear about your DH, he sounds like a strong person going through all this, as are you supporting him. I know my DH goes through it with me too, and it’s his hopes and dreams put on hold by it all which makes me feel so bad.
I hope your DH’s transplant starts working again, it is a good example though of how a transplant isn’t a reset. I have heard so many times “well you can just get a transplant and you’ll be fine”. I know they are amazing but it doesn’t quite work like that.

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tobee · 12/07/2020 22:08

Yes Dh had a lot of doctors saying that he'd be a lot better off with a transplant. It is for most people. It just seems unfortunate that Dh was doing well on dialysis. Then the holy grail of a donated kidney comes up. The op goes well. We get used to the new way of life. Then bang! Uncertainties return . Sad

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fairplay · 14/07/2020 16:44

Great thread - thanks @SandysMam. I've never spoken to anybody else with ckd and it seems a very unknown condition.

I was diagnosed with iga nephropathy about 12 years ago but my function has declined very slowly and at the last blood test showed 54 eGFR. I had another biopsy last year and it showed no active iga nephropathy which is great news but I've not heard anything from my consultant since!

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QueenMabby · 14/07/2020 17:02

Hi. Not me but my DB also has IGAN. He was diagnosed aged 24 and was in need of a transplant ten years later. He had a live donor transplant from a family member but suffered a massive acute rejection episode almost immediately. Although they managed to save the donated kidney it suffered a lot of damage. It’s carried on for nearly 8 years but he’s just been told he’s 6-12 months from dialysis. He has a couple more live donor options (me included!) but we’re on a wait and see at the moment.
He worked full time right up until his transplant but did used to pop out to his car at lunchtimes for a nap!

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SandysMam · 14/07/2020 17:28

Hi @fairplay, sorry are going through it too. I dream of an eGFR of 54 though Grin so fingers crossed you stay stable, that should hopefully be enough to get you to an old age! The body is amazing really, I am amazed at how I function on such low kidney function and as much as I curse the illness, I also praise the old girls for still chugging along!!

@QueenMabby you are amazing if you are considering donating to your brother, it is such a selfless thing to do. The process is so good though, you can’t be pressured into it, there are loads of chances to “get out” of it if you really feel you can’t, and you get such rigorous health checks. They will only take your kidney if you are in rude health!
I hope your brother (and all of us who need it!) get what we need.

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HairyPotter · 14/07/2020 17:44

Hello, this sounds like a great support thread and I’ll join if I may. I’ve had IGAN for over 20 years and have been fine until the past 18 months. My GFR is currently 17 but has been as low as 15. I’m in the limbo period before dialysis as well. Had all the work up and conversations with transplant surgeon and transplant team. Hoping to hang off a bit longer before surgery to begin dialysis. I’m hoping to do PD overnight as I think that will give me the best quality of life.

DH is a (rather reluctant) potential donor but not a good enough match so would need to do the paired scheme, he’s still in the middle of all his tests but Covid has put a stop to everything at the moment. He’s not in the best of health so I doubt he’ll be accepted. No other donors on the horizon so it’s the list for me too I think.

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SandysMam · 14/07/2020 18:34

Welcome @HairyPotter, this is exactly what I set this up for, just nice to have a little chat with people going through similar!
Do you mind if I ask how long your eGFR has been around 17? I heard about a woman who’s function stayed at 14 for 10 years! Waiting is the worst bit though, it’s mentally torturous, I work really hard with various techniques to try to stay sane, it mostly works but does take effort. I sometimes wonder if I will actually feel a sense of relief when end stage comes as no more waiting!

I also like to try to raise more awareness of kidney problems as I don’t think people understand they can happen from high blood pressure or uncontrolled diabetes.

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SandysMam · 14/07/2020 18:35

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!

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AdditionalCharacter · 14/07/2020 18:40

Great thread.

I have TSC, and have 3 large angiomyolipoma on both kidneys. One is 13cm, and two smaller ones on the other kidney at 7+5cm. I have had three embolisations, and now on low dose chemo tablets to try shrink them. Should have been on the full dose now, but because of COVID-19 I am still on half the required dose for good results. They can't be removed and I feel like I'm a ticking time bomb waiting for them to rupture.

My kidney function is ok for now, but taking the tablets is just for longevity really, and it is likely I'll go into failure and need a transplant somewhere along the line, or just lose a kidney and rely on one.

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HairyPotter · 14/07/2020 18:41

So in February 2019 it was 29 then it’s has dropped a couple of points every 2/3 months. It fluctuates up and down but the trend is obviously always down. It was 15 two months ago then went back up to 17. I’ve got my next blood tests next week so expecting it to drop a little again. My nephrologist is happy to hang off on dialysis as long as I feel well enough. I’m on a few fb support pages and quite a few people don’t start treatment until about 5 GFR (which feels quite low to me)
What sort of dialysis are you thinking about?

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SandysMam · 14/07/2020 18:52

Hi @AdditionalCharacter that does sound rubbish (and complicated!). Hopefully the chemo tablets do the trick.

I’m not sure yet re type of dialysis, I have always buried my head in the sand about it. I am quite squeamish and the idea of it all of horrible but I know I will have to do what I will have to do when the time comes.

I am always fascinated when I hear of people who carry on working etc on dialysis, how is this even possible?
I love following the Queen of Dialysis on Twitter, she is really inspirational but I can’t marry up her condition with mine if that makes sense, just feel I will be so much worse.
I do think positive mindset has a huge part to play in it though as well as finding pleasure in small things.
I have saved Game of Thrones to watch when I am on dialysis! The whole series!!

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HairyPotter · 14/07/2020 19:16

When my function dropped below 20 that triggered moving to the Low Clearance clinic instead of the usual renal one. That’s where I met with the dialysis team to talk through my options. I’ve no idea how I’ll manage to keep working (no sick pay in my job) when I start. It’s a worry and although I’ve been told to apply for PIP, I’ve not bothered as its next to impossible to get even when on dialysis by all accounts.
I’m hoping that PD will be less invasive if I can do it when I’m asleep. I think there is quite a bit of setting up and resetting which I’ve been told takes about an hour a day on top of the actual dialysing. There’s so much to consider, it’s not easy is it?

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tobee · 14/07/2020 19:25

Re dialysis types, my dh did PD for 7 years. He was really not sure about it at first but it worked very well for him. He was scrupulous about hygiene. It meant we could go on holiday with minimal disruption and he was able to work away from home when he needed to. It was also quite gentle. He did the overnight on a machine type (a bit bigger than a home printer) but was able to do manual exchanges now and then.

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tobee · 14/07/2020 19:27

Dh's set up took about 20 minutes at night and about 10 minutes in the morning iirc.

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SandysMam · 14/07/2020 19:29

That’s crazy about PIP being hard to get, hopefully there might be some other benefits? We have been saving for this and have always lived below our means, smaller house than we could have afforded, shit car etc, but that in itself has had it’s own issues in that I feel quite resentful of friends who haven’t got these issues planning for the future and stretching themselves with big lovely houses etc. Saving for a holiday? No actually, saving for when part of my body stops working! How shit is that!!

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tobee · 14/07/2020 19:31

Also, when he talked to a consultant about having to restart dialysis, they said how home haemo is much easier now, the machine is much smaller, people tend to do it every day for a couple of hours and some can do overnight.

The advantage of doing it every day is that your dialysis is more gentle and the frequency makes you at a more constant level I believe.

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SandysMam · 14/07/2020 19:32

Thanksv @tobee that kind of insider info is so helpful and gives me hope! So did your husband keep working? Were work understanding?

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HairyPotter · 14/07/2020 19:52

Tobee that sounds very positive, thanks. That’s my thoughts, it’s more gentle and you can have your days free. The thought of still going on holiday is a huge bonus as well. I know hemo is possible away from home but it’s more involved and reliant on having units close to where you want to stay. Did you have room for all the supplies? That’s my worry, I’ve see some huge deliveries and not sure my cupboards can cope! Might need to invest in a decent shed to store them.

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SandysMam · 14/07/2020 20:02

@HairyPotter might be worth contacting kidney care U.K, they might be able to advise on grants for things like sheds to store stuff in.
I hadn’t thought of that being an issue, we have limited space too!

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tobee · 14/07/2020 20:44

He's self employed so he didn't have that to worry about. Although, being self employed, he didn't have any way of getting recompense for any loss of earnings. But he's always had that.

There are a lot of boxes of the fluid, we managed to store stuff in a corridor. The delivery blokes also brought the boxes in to our house which involves climbing several flights of stairs! They were great though.

When we went on holiday you can arrange for delivery of supplies but you take your machine with you. Occasionally he stayed overnight for work and took manual exchange bags with him that he could fit in a small wheeled suitcase and a back pack and fit in his overnight clothes.

You also have to have a supply of connectors and wipes and hand gel and wash. It sounds like loads but it wasn't too much and you get used to it.

He trained for some weeks and two PD nurses came to our house to talk to both of us and see we were happy with the set up.

In all the time he was on it, he only had a handful of technical problems. He had to phone a call centre in Florida (I think) when an alarm went off on the machine about a problem with the machine. And it was sorted very fast. Also a couple of times he forgot a part when he was away and I had to google to find the nearest PD hospital to drive and pick up a spare late at night. But that says more about my forgetful Dh! Grin

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SandysMam · 16/07/2020 20:22

Hi everyone (if anyone is still around!!).

Feeling a bit low tonight, so much talk about looking forward to Coronavirus being over in the future, plans being made etc etc when for me, this was probably my last year for being “free” before it all kicks off with my kidneys and time moving in is a bad thing for me. Lockdown has been quite nice really, have felt like I have paused my problems but time to wake up to them now. Just feeling a bit pathetic!! Does anyone else feel like this, like a constant sense of impending doom? I work hard to practice my mindfulness, living for today which helps.
Also do my daily gratitudes which helps.

Feel like my DH is losing patience a bit too, if he is like this now, how the hell will he cope when things get worse? Can’t help but feel this isn’t what he signed up for!!

Writing it down helps, very cathartic!

On another note, has anyone signed up for that new Kidney Beam platform? I was really excited about it but it’s £19.99 a month!!

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HairyPotter · 17/07/2020 18:57

I’m still here! I absolutely know what you mean. I thought 2019 would be my last ‘normal’ year but I’m still feeling ok. In fact I’ve just booked a city break today to Krakow in September. I’m a bit concerned about Covid19 but if I don’t go soon then I don’t know when I’ll be able to travel next. Might as well go while I’m fit enough.

Sorry to hear you’re feeling low, I don’t try and think about it much as I can’t change anything, it’s going to happen sooner or later so no point worrying about it right now. (I appreciate this is easier said than done though) I do sometimes think about how my life will change, how difficult doing dialysis will be and how painful it might be but mostly I try and stay as positive as I can be. I feel lucky in a way, at least dialysis is an option that will keep me alive until (hopefully) transplanted. It could be so much worse.

I’ve not heard of Kidney Beam, what is it?

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