[CluckyParticipant]

Just thought we'd let everyone know how we are doing.

Bruce had his stem cell transplant Oct 2011 (thanks again for all the support we received from friends on the forum). He was told he was in remission (or plateau) Jan 2012. The myeloma has spoilt his kidneys and he continues to have dialysis.

Just after the remission news, I picked up a booklet about home dialysis at the renal unit. It was brilliant – lots of stories about people managing at home – it listed loads of positive?s and negative's.
I told Bruce about it while he was on the machine, and asked him what did he think? He was really keen. My main worry was, would I be able to cope with the needling – Bruce wouldn't be able to do it because of where his fistula (dialysis access) was, and also his neuropathy.

We spoke to the nurses and things moved very quickly. On Feb 14 2012, we started training at the renal unit at the hospital. Training takes about 3 months. During this time, technicians come out and plumb and wire your machine in. The machine, chair and stock were provided free of charge, and we also get help with our water and electricity bills (they jump up quite a bit).

After 3 months we started dialysing at home. I won't lie, it is quite a stressy business, but the plus side(s) are we don't have to worry about getting to the unit in bad weather or the car breaking down – Bruce is so much happier/ relaxed in his own home – if we have a late night out, we can just get up when we like and then dialyse. He used to dialyse for 3 & 3/4 hrs – three times a week. We opted for four sessions of 3 hours (he didn't like having to be in the chair for such a long time).

We are in a good place at the moment. We still go out and play in a band, but we had to change the band?s name (it's now 'Dog with no name') – we picked up an internet troll (haha).

Love and best wishes to everyone

Clucky
(Mal & Bruce) xx

[tomParticipant]

Hi Mal and Bruce (clucky great tag lol)

Well done you two doing all that at home 😀 we have some friends down the road from us and he has his gear at home and he does his at nite so it is less problem during the day 😀

Good Luck with it all

Tom Onwards and upwards xxx

[CluckyParticipant]

Hi Tom,

Thanks, we are pleased we can manage at home. We can please ourselves when Bruce dialyses, but ideally they like us to do it while someone is at the renal unit at the hospital (between 7am and 9pm, Monday to Saturday). The NHS would like to get more people dialysing at home, it's cheaper!

He still has to see the haemo doc every 3 months for myeloma check ups, the results are always a bit sketchy for people with renal failure. He has to see the renal doc every 3 months too. He has blood tests every month through the dialysis side of things(1 pre dialysis and 1 post dialysis). Does your friend have access to online 'Renal patient view'? It's brilliant for checking up on yourself.

Love and best wishes to you,
Cheers
Clucky xxxx
(Mal & Bruce)
or as he says 'Clucky and the Old One):-D 😀

[robertorr51Participant]

Hello "Chucky"

My wife has been receiving treatment for MM since 2007. now, her kidneys are not working and she is going onto dialysis. We would like to do this at home, saves all the travel 3 times a week. How long does it take to get approval to do this at home. I understand a new "compact" machine is available Nx Stage for home use. Can you give me your views regarding

Regards

Robbie Orr dialysis and home use.

[CluckyParticipant]

Hi Robbie & wife, Bruce had been on dialysis for about 14 months. His fistula was about 3 months old.
When we asked about home haemodialysis at the satellite unit, things happened very quickly. They made us an appointment to see the h/h team within a couple of weeks. Then we did our training on the hospital dialysis unit. Training takes about 3 months.
After a couple of months the installation team came out and installed our machine for us. The plumbing side of things comes on a board that they fasten to the wall, and they supply a R/O to filter the water. The machine, chair, R/O and supplies are free, and they (we're in Cornwall), help with water and electric bills too – they jump up a lot.
After about 10 weeks on the hospital dialysis unit, we moved to the h/h block – this is where you can see if you are ready to fly solo.
Not everyone is suitable for home haemo, and some start the training then decide it's not for them. The renal unit would like to have more people doing home haemo.
Yes, we've heard of Nx Stage. The first thing we asked our renal doctor was, is it as efficient as the big machine – he said 'no' – but they are useful if you do loads of travelling. We've also heard they don't have bubble traps – they alarm, but don't stop. Also it means dialysing more often, but for shorter periods – so you have to think about wear and tear on your fistula.
There are some brilliant American sites that tell you about Nx Stage machines.
We're really happy to be dialysing at home – there are pluses and minuses, yes, sometimes it's stressy – but the good points outweigh the bad ones.

This has turned into a novel, sorry 🙂
Keep in touch

Cheers
Mal & Bruce

[eveParticipant]

Hi Mal and Bruce

It is lovely to hear from you and to know you are doing great:-)

When any questions on kidney failure come on here I think Clucky,but you do not post often,I can understand that as life seems to have moved on,and a good life at that.

So nice that things have gone well for you.my best wishes to you both Eve

[CluckyParticipant]

Hi Eve, when we first started dialysing at home, we didn't check the site much – and we should have done, because there was a young girl asking about her Dad and the dialysis side of things. By the time I saw the posting, it was months later – I messaged her but never received a reply (sorry).

We check the site out more often now, but don't do much posting.

We've been dialysing at home for about 14 months now – we seem to have a lot more time and we're using it to get out and about. 🙂

The renal doctor mentioned a kidney transplant a while back, (I said Bruce could have one of mine), but our myeloma doctor didn't think it was a good idea and the home haemo was going well, so she said 'If it ain't broke, don't fix it'.

If we can help anyone with the kidney side of things, we're here (but we ain't no experts) 🙂 .

Cheers Mal & Bruce

[CluckyParticipant]

Hi again, have attached a few photos of our set up.

Cheers
Mal & Bruce.

[ali49Participant]

Hi Mal and Bruce
I was interested to read your posts re home dialysis. I was on dialysis for awhile when I was first diagosed and the staff were training people in readiness for home dialysis and I thought that was a brilliant plan.I
Fortunately my kidneys have recovered sufficiently that I no longer need dialysis but I am aware that they may not last forever. I use renal patient view too!
I hope you continue to stay well
Best wishes Alison

[CluckyParticipant]

Hi Alison, dialysing at home meant we were able to enjoy the lovely weather we've had recently. It's little things like that, that give you a bit of a lift.

All the staff at Treliske were brilliant helping us with the training, and they are always there as back up if we need them.

Bruce was admitted with kidney failure, though we had no idea what was going on at the time (it was after a blood test – the GP was treating him for acid reflux). At the hospital, they did loads of tests and said it was myeloma – it was too late to save his kidneys (but he says – not too late to save his scrawny neck).

Best wishes to you from both of us x

[ali49Participant]

That's interesting, I was being treated for acid reflux as well, that was after a month on peppermint capsules in case it was irritable bowel syndrome! I only had a blood test after I found to be anaemic when I went to give blood.
Hope you have lots of great days in sunny Cornwall, you have such a beautiful coatline there.
Alison

[johnandjunediamondParticipant]

hi mal & bruce,pleased to hear your in a good place,mentaly & phisicaly

DITTO,!!
june was also being treated for acid/silent reflux !! and unfortunatly her kidney's are struggling a little at the moment.

[eveParticipant]

Hi All

Interesting,Slim was in the same position,being treated for acid reflux,taking,omepralole,for years before Myeloma,and although lots of damage to bones it was the kidney,s that he was admitted for!!!!!

May be this is one of the very early symptoms. Eve

[CluckyParticipant]

Renal bloods this morning, pre & post, so only just checked the mail.

Yes, agree with Eve, maybe this is one of the early symptoms and GPs should maybe do a blood test straight away. Bruce had to wait nearly a month before a blood test, despite me asking if they could fit him in earlier at either of the local surgeries – I was told all the nurses were very busy.

(June, hope they can get your kidneys sorted soon).

Cheers
Mal & Bruce x

[robertorr51Participant]

Hello Chucky

Is doing dialysis at home better than going to the hospital clinics

Robert & Carole

[Author]

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