Hi both, Bruce was packed off to the satellite unit after being on dialysis for about 6 weeks at the hospital. He was classed as 'walking wounded' – his dialysis was pretty straight forward from their point of view.
Sorry your team are being so unhelpful.
You'll get the hang of the dry weight thing. They'll try to work out what your wife's weight is when she's not carrying any excess fluid. If she's carrying fluid, her blood pressure will be high and she'll have fat ankles. They told us to press your finger into your ankle for a few seconds – and if it leaves a dimple that takes a while to disappear – that's fluid that shouldn't be there. Also if you are carrying far too much fluid, it can get on your lungs. Bruce had it that bad once – he was coughing up pink froth. He had a chest xray, you could see the fluid and it was taken off through dialysis.
It's good if she still wee's, because that means they won't have to take loads of fluid off. Some dialysis patients have litres of fluid removed.
Hope all goes well with the out patient dialysis.
xx
Hi both, haven't heard of pickle juice helping with cramps – heard of other 'things', but you have to be so careful on dialysis, so don't go there. Have a word with your renal doc or renal nurse about the cramps – (you didn't say if they were while your wife was on the machine or at night).
Think it's mostly to do with fluid balance. Bruce gets the cramp sometimes if he is 'dry'. You'll already know part of dialysis is about fluid balance – carrying too much fluid pushes blood pressure up. You have to weigh in & weigh out and they take off any excess fluid through dialysis.
Since Bruce had his stem cell transplant he wee's more, so we don't have to be quite so careful with fluid (some dialysis patients don't wee at all, so fluid build up is a big problem).
He still occasionally gets cramp at night, but it's been quiet a while since he had it on the machine.
Like we said before, have a word with your renal doc or nurse – if your wife needs something prescribing, they will know what's safe.
xx
……..more time sounds good……..more time, treatment free sounds even better 🙂
I love the 'net'. I'm always trawling it for news of new myeloma & kidney treatments. Yes, we clutch at 'hope' too.
x
Hi Rebecca, when Bruce was admitted and we were told what was going on, we hoped his kidney function would improve – but it didn't. His eGFR is currently 6, sometimes 7 🙁
Since he had his stem cell transplant, he wee's more than he used to. This is a tiny blessing because it means the fluid side of things isn't so crucial (some renal patients don't wee/pee at all, and all the fluid they gain has to come off through the machine).
Treliske wouldn't do the SCT because of Bruce's kidneys, they sent him to Derriford. The consultant there had done a few myeloma patients with renal failure – he thought he could 'pull it off'. Bruce had a half dose of melphalan, and he didn't have to drink loads of water like the others (but he did need the ice lollies). I guess a lot of the melphalan was removed when he was next dialysed. They weren't worried about saving his kidney function, because his kidneys were already shot.
Bruce sees his renal doc every 3 months – and has his blood checked every month for the renal team.
He also sees his haemo doc every 3 months, and has 'bloods' taken there too.
The renal doc suggested a transplant because Bruce was doing so well and I always said if it was a possibility, he could have one of mine, but the haemo doc thought it was too big a risk, because of infections – anti rejection drugs etc.
Cheers Mal & Bruce
Hi both, I can only tell you how it was for us. When Bruce was admitted to hospital (evening), we had no idea what was wrong. The next day they put a line in his groin and he had his first session (just 1 hour to start with), then dialysis 3 days on the run. A week later – a line in his shoulder/ neck and he was having 3 sessions a week. He was so poorly when he went in, he felt better after a bit of dialysis and was able to eat something and keep it down.
Dialysis patients are nearly always tired after a session (and they feel the cold – that's why a lot of them have blankies – and Bruce sometimes wears a glove too.
After a couple of months he was classed as one of the walking wounded in renal terms, and moved to a satellite unit where you get a proper time slot (instead of having to wait until there is a bed or chair available).
There's a lot to take on board, watching your fluids, special diet, blood pressure etc, but you learn to adapt – you have to.
Bruce has more energy now, (though his myeloma is in plateau)than he used to, but he easily gets tired. Dialysis isn't as effective as a kidney.
Our renal doc suggested a kidney transplant, but our haemo doc said 'no'.
Your renal team will sort out how much iron and aranesp Carole needs every month, that might make her feel a little better.
Bruce misses his surfing (had to give it up because of the myeloma & dialysis), but he can still play his guitar 🙂
Love to you both
Mal & Bruce x
Hi Robert & Carole, we think it's so much better at home, than being at the hospital or a satellite unit.
'Positive things'
1. Don't have to drive to hospital for your 'slot' – so no worries about the car breaking down or bad weather (snow, trees down, that sort of stuff).
2. No hanging about in waiting rooms.
3. You can decide when to dialyse. We dialyse in an evening, because Bruce is always tired when he comes off the machine, we wait to make sure he's stopped bleeding properly – then go to bed. If we're going out in an evening – we just change the days. They like him to do 12 hours a week. We opted for 4 sessions of 3 hours. He didn't like sitting in the chair for such a long time.
4. You're at home, with all your own stuff.
5. Bruce says he doesn't feel as 'poorly'. Having to be at hospital for half a day, 3 times a week, every week makes you feel like you're a sick person even when you're feeling quite well (as well as someone with myeloma & kidney failure can feel on a good day).
6. Christmas at home.
'Negative things'
1. Stock takes up quite a bit of room – so you need space. Stocktaking.
2. You need a good sized space for the machine etc
3. You've got a dialysis room in your home – some people like to keep dialysis and home separate.
4. The time you spent travelling to hospital is taken up, setting up and cleaning the machine
'Other things'
It needs to be a joint decision. It's a big responsibility – but the plus side is, you feel like you've managed to take charge of a bit of your life again – not so dependant on the system (but the girls at our renal unit told us we can phone anytime if we need help/ reassurance).
Yes, I'd be a liar if I said it was a piece of cake – it's stressy, especially when things go a bit wobbly and you are there without the nurses to take charge.
I will probably think of loads more stuff – and Bruce will say "You've missed……….).
I'll stop here, because this is slipping into novel mode again
Cheers
Mal & Bruce x
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
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
Hi again, have attached a few photos of our set up.
Cheers
Mal & Bruce.
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
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
Hi Vicki and Colin,
Brilliant news 🙂 🙂
luv
Clucky
(Mal & Bruce)xx
Noticed your profile says your Dad started dialysis Jan 2013, how are things going?
luv
Clucky
(Mal & Bruce) xx
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 😀
Hi Dee, we haven't checked the site out in ages – sorry. How is your Dad?
Bruce was 63 when he was diagnosed with Myeloma – he went into hospital as an emergency (Oct 2010),(kidneys were failing, but we didn't know that at the time). They put a line, first into his groin, then into his neck for dialysis. He had 8 cycles of chemo (thalidomide & dex) – then a stem cell transplant (Oct 2011). He was having dialysis 3 times a week, 3 & 3/4 hr sessions.
Jan 2012 he was told he was in remission. Feb 2012 we started training for home dialysis (haemodialysis – 2 needles in the arm). Training went well, and we have been dialysing at home since May 2012.
If we can help in any way, info…anything, we're here.
luv
Clucky
(Mal & Bruce)
