This topic contains 21 replies, has 7 voices, and was last updated by 
Clucky 11 years, 4 months ago.
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
Hello again Bruce / Mal
Thank you so much for the stream of answers to my questions. I show your replies to Carole in the hospital. Is the first month on dialysis at hospital the most stressful and tiring as the body is adjusting to a new method of cleaning out the body of waste and toxins. As her kidneys were only working at 18% do you think dialysis helps to increase this level of function and so increase energy levels and lower the tiredness laevel.
Thanks
Robert / Carole
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, I've been reading your posts with much interest – I was admitted to hospital with only 5% kidney function and 8 months on I have an egfr of 22 occasionally the dizzy heights of 23 but I never went on dialysis? and was discharged from hospital when they were at 15%. I was told that because I could pee a lot I didn't need it tho' no doubt in the future I will. Its very strange because I can exercise as normal – played a 3 hr tennis month in the very hot weather and feel totally normal tho' my bloods are obviously not what they should be. Am trying to get SCT, one centre does not want to risk my kidneys. I have asked to see a renal doc but my heamo doc always says no need he liases with him if necessary! Am interested that a transplant was suggested to you as I thought if you had cancer you were eliminated from the list? or can you have one from a living donor only? Not really explored this area yet…. Rebecca
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
Thanks for that – I suppose there is a much bigger debate with mine as I am well on my function at present and do I want to risk dialysis sooner rather than later? will let the prof decide. All I want is the "hope" of more time and treatment free and think I will risk them given the chance – what's life without hope eh? I know of 2 people who had living donor transplants – both in 30s and done in London – and their thoughts seemed to be that the transplant drugs/immunosuppressants actually helped the myloema keep at bay – but insufficient data to support this and I think they went ahead due to the age factor. I do think kidney function does improve a tad after SCT but apparently they have no way of knowing what it will do your kidneys – as they say everyone is different! Have been told by this sites nurse that the cut off point for transplant is 15 – 20 so I'm on the cusp as egfr is only an estimate and can be a few % out.
……..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
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