Home Heamo dyalysis

[Catherine_Uk]

Hi Everyone.

Husband had his appointment yesterday to map his veins for a vascular access. Apparently he has really small veins so has to have 2 operations on his arms, 1 to connect a vein to an artery or a bigger vein I think, then another to then connect this to a deeper artery in the arm.

He could have had it done in a couple of weeks but had decided to get Christmas out the way first.

What I lovely way to start the new year!!!!!

He has decided to do home hemo
.... anyone on here doing this?

Was reading some interesting stuff about nocturnal Hemo where you do it overnight pretty much every night whilst asleep. As it's everynight there are hardly any food restrictions.

He's down to 8% kidney function now but you wouldn't know.

Catherine x

[Dotty]

Hi I,

I'm pleased to hear that decisions have been made...it must be a relief to you.

I have started my training for home hemo by doing my own needles...not as scary or painful as I was expecting.

My nurse has said that she recommends 4 times a week at home for 2hrs althought the consultant says 5 times. Haven't heard about overnight but may ask about this.

Good luck

Dotty

[Catherine_Uk]

Thank you for the reply Dotty it is indeed a relief .... for me anyway.

Yes definitely ask about the nocturnal hemo, the idea behind it is the longer your sessions the better you feel so 8hrs whilst your asleep should leave you feeling fantastic.

This is Guys Hosp in London that gave us the information for this so not sure if it's a new idea or not.

Hopefully we can incorporate the two, doing the night sessions when I am off (so able to see to the baby at night) but when I am back at work working night shifts he can do a normal day time one.

Glad the needles aren't as bad as you thought as know this will worry my husband. He has a hosp appt on thursday just to learn to do the little Injections as his haemoglobin is low and he is nervous about this.

Funny he had no problem stabbing me with a needle last year when I was goong through IVF and scared to do the first one .... haha he said yeah but this time I've got to stab me!

[JMan]

Yes, I've been on home heamo for about 10 years..

My home setup here, see link below.

Got a newer machine than in the pics but I need to upload some more.

https://www.facebook.com/media/set/?set ... 02a3b3a45b

The main thing is. TRY and keep some sort of social life, and be otherwise fit and healthy. It can become boring and isolating otherwise..

[Catherine_Uk]

Thank you for the link to your photos, really helpful, now worried our spare room will need a big big sort out to make room for everything.

Apart from space for the machine & essential equipment needed for that day (we have a garage we can store the bulk of it in) what else would you suggest for the room he will be using.

It has a sofa bed in there, a TV, bedside tables can be uses for paperwork, snacks etc.

I'm a bit concerned about the cream carpet .... is leaking blood a common problem?

Also have you found the electricity bills are super expensive?

Thanks
Catherine

[Thumps]

I think you can get help with utility bills? Not sure - the Guys Nurses are founts of information though. Good luck!

[JMan]

Insist on a sink, if they say you don't need one.

You do, not only for handwashing, vital, but for draining bags of fluid after priming etc.

Yes, theirs some payment from hospital finance towards utility bills. Ours is payed into the bill payers account (in my case my dad). We do find they need reminding, usually in writing, as the finance lot seem to have issues comprehending what they are doing.

Don't ask me how the calculate the amount, the techs know!

The machine will be on a spill tray, but its hard to avoid splashing outside of the tray. Grants available if your really tight for finance:

http://www.britishkidney-pa.co.uk/grants

Also Turn2Us http://www.turn2us.org.uk/grants_search.aspx

Some blood spills are unavoidable, as well as dialysate/saline spills.

Also one vital thing, especially in this weather. Most machines only have battery backup for memory ie settings, they don't work in powercuts.
So an emergency torch is a very good idea (not sure if its in my album) They're about 15 quid online and stay charged in the wall.

If you own your property you may get a reduction in banding,for council tax as the room is for medical use only. Inform the local authority and they usually send someone out to check.

For rentals you may well be approached to pay bedroom tax. Totally ridiculous system.!

Hope this is useful:)

[wagolynn]

I think you will find the carpet must go it is not hygienic, replace with Linoleum (glued down and sealed to the skirting boards) Vinyl, Ceramic tiles or any surface that can stand daily washing down. Fitting these, I think, is a professionals job making sure they understand that you are looking for a washable floor, with some systems they may replace the wooden skirting boards with a plastic one having a radius at the base (no corner between wall and floor like in hospitals). I think you may able to get a contribution towards the cost.

[JMan]

Inclined to agree with this.

Some trusts will pay for flooring. Lino needs feeding occasionally to make it last, but can be very durable.

My setup, my dad laid durable laminate flooring from Wickes. I wouldn't say its necessary to replace skirting. Its a home environment, as long as its got a good coat of paint.

I admit to being a bit slack with the floor washing, but we do discourage strangers or outside cleaners from coming into the dialysis room.

The spill tray will surround the immediate area of the machine and is basically a wood frame with a lino lining.

[Catherine_Uk]

Don't think my husband realises how much change is going to be needed, I find it all quite overwhelming at the thought of turning what is currently a lovely bedroom into a hospital room, and would have prefered him to go to our local dialysis unit (very close by) so when he comes home we can forget about dyalysis for a bit. ... bit this is selfish I know ... one step at a time. We should have someone coming to the house in the new year to see if the room is suitable.

Thanks Everyone

[JMan]

One thing I will say

While dialysis units can have a social aspect of their own, in the unit your hubby would receive the minimum of thrice weekly treatment.

At home you can, plan dialysis AROUND your life, do MORE dialysis, better for health, its not at all selfish.

It takes a lot of your time, but its not like you have to sit by him for 4 hours.
We use a baby monitor, so that there's contact and I can call if I need something.

What you should do is make sure you have some sort of life outside dialysis, classes, events together, and make use of the time that isn't dialysis related.

I do my dialysis, close the door. Thats it until the next session.

[Catherine_Uk]

Yes Jman you are right. I just need a new mindset now, at home will be so much better and the machine is portable so if we want to go away for a few nights in the uk (which we are in April) we can .... amazing!

I was dissapointed when I saw we wont be able to get any help with our water bills (we are on a metre) as we are not on any benefits .... I realise people on benefits need the help but just because we are not on a low income dosen't mean we are not living from paycheck to paycheck and we definitely do not live an expensive life .. a cap on our water bill would have put our mind a ease a bit!

Never mind, we are off to take our 6 month old son to see Santa today, maybe I'll get to ask him for a kidney for my husband for christmas!

[rheaybou]

I wish that I had done my PD dialysis in a different room, I sometimes sit in bed and start to go through the routine of setting up/connecting in my mind.

However if the time comes round that I have to start dialysis again I will pick home treatment - just need to get over the fear of self needling

[wagolynn]

Don't think my husband realises how much change is going to be needed, I find it all quite overwhelming at the thought of turning what is currently a lovely bedroom into a hospital room, and would have prefered him to go to our local dialysis unit (very close by) so when he comes home we can forget about dyalysis for a bit. ... bit this is selfish I know ... one step at a time. We should have someone coming to the house in the new year to see if the room is suitable.

Thanks Everyone

He and his carer will still have to go the unit for training.

[JMan]

Yes Jman you are right. I just need a new mindset now, at home will be so much better and the machine is portable so if we want to go away for a few nights in the uk (which we are in April) we can .... amazing!

I was dissapointed when I saw we wont be able to get any help with our water bills (we are on a metre) as we are not on any benefits .... I realise people on benefits need the help but just because we are not on a low income dosen't mean we are not living from paycheck to paycheck and we definitely do not live an expensive life .. a cap on our water bill would have put our mind a ease a bit!

Never mind, we are off to take our 6 month old son to see Santa today, maybe I'll get to ask him for a kidney for my husband for christmas!

Not sure where you heard read about not getting some reciprocal payment towards bills.

This has NOTHING to do with benefits, or means testing to my knowledge, or being in rented accommodation. If you own the property. You should get, payment towards utility costs. A reduction in council tax (1 bedroom less).

Give the NKF a call and find out the facts:

http://www.kidney.org.uk/helpline

You should also check on your providers website for water and electricity and register usually either as a disabled or special customer. They then have an obligation at least to notify you if they are doing planned works on power or water in the area.