Introduction and a few worries

As my name says I'm rhi's mum, Rhian is my 19 yo daughter who has been on HD since June. I've been needling her since end of July in preparation for home HD, which is terrifying we have one week now til training, does anyone here do home HD and have any tips, I am confident with the needles that bit don't worry me it's actually how to handle the responsibility and getting past the whole I'm now responsible for her dialysis that I find scary. And I have been searching the net for help for days and it was by chance that something unrelated bought me here

14 Replies

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  • Hello

    Please dont be afraid ive been on HD for 6 years at home the training unit at the hospital wont let you home with a HD machine unless they are confident you are able to cope and you show you are confident enough to handle any situation generally the machines are fairly reliable and tell you what to do do in a situation if it arises plus you should always be able to contact the Dialysis centre.What country are you in? If you want to talk direct be free to email me on mandcgibs@vodafone.co.nz id love to hear from you Regards Mike

  • Thankyou, I'm in the UK I just think more my daughters fears rubbing off, our home HD nurse told her that if she's not ready she can stay at the hospital longer or he'll come out longer which she will probably choose. She's not good with change due to her autism so it's a big big step I'll save email address Thankyou

  • Cliched, but being worried as a mum is normal. This is an extra responsibility for you (and my mum still worries after all these years (I'm 40 next year!)

    The Unit won't let you go solo until they are confident you are both confident. Certainly in the UK home heamo, and peer support is greatly improved. Including this site there is also Home Dialysis Central (based in America) Kidney Patient Guide , a UK based forum and info site, and a huge number of others on various platforms.

    In my case my home team have a direct number, I can call, bloods are done by a nurse visiting monthly so any problems can be discussed. I can email my consultant directly (or call in an emergency) and the technicians are also reachable IF the machine breaks down.

    The NKF and BKPA offer support for patients and carers

    kidney.org.uk/

    and Young NKF on Facebook. facebook.com/YoungNKF-13093...

    The Young NKF also organises annual group trips for young patients.

    One question I have is why your daughter is not training to self needle, as this is often the case for home heamo (I started self needling at about 10 years old.

    You can see my home setup, and some photos of me and fellow patients when I was young here: facebook.com/media/set/?set...

    All the best

    James

  • Aaah, just read your profile and read that your daughter has Autism...

  • Thankyou 😊 All that has certainly helped to calm my mind and I'll get her looking at the sites too, it takes a push to get her looking at anything because she hates changes but she's named her machine before it comes so it's a step for her. She has meltdowns when transport is late or needles have taken longer and no way was she touching those.needles , she sets up for me and will have responsibility of setting up the machine but we have to do everything one step at a time she was picking the scabs til we had to resite but now we're back to square one I have to clean and pick and clean and needle because as you know the first few weeks making the buttonholes do hurt

  • Hi rhian's mum

    Firstly, well done for being brave enough to look after your daughter on home HD. You will never know the difference you are making to her health, wellbeing and life overall. I too started dialysis at 19. I have had several stints of home dialysis over the 25 years I've been a renal patient. I currently do nocturnal /overnight dialysis of 8-9 hrs. I am totally self caring. I have been looking after myself for the last 7 years, originally on 4hr 3x week regime.

    Tips-do not panic. You will be very well trained and will not be allowed home until both you and your daughter are happy.

    Give your daughter some control too. Can she set up her own machine? Can she sort alarms? That can ease the stress for you both.

    Be prepared. Always have things like gloves, dialysis packs, hand gel within easy reach of the machine. Think carefully when organising your room at home.

    Talk to your home therapies nurse about anything. Even if it is trivial.

    I wish you both the best of luck. Feel free to ask anything else.

    Nikki.

  • I just read back and saw your daughter is on the autism spectrum. I have worked with students with autism and understand the extra challenges you are both facing, embarking on a dialysis lifestyle. You must be an amazing mum. Please make sure you have support for yourself. X

  • Thankyou and its finding the support for me that's proving trickier, my husband doesn't fully understand the responsibility I'm taking on so its been a tough year with only him working, I wasn't well enough myself and then her kidneys packed up properly just as I lined myself a job up. I'm hoping he'll realise once he sees everything in action lol. We are trying to get her to take some of the responsibility and our home dialysis team leader (whatever he is lol) is adamant he will get her doing some of it as long as he remembers not to push her or he'll hit the brick wall and she won't even speak to him let alone do anything he asks, we've had meltdowns every week because if it doesn't go to plan because the transports been late or needles have taken longer her day is messed up as she has times in her head what she's doing and when and if it's not on time well yeah she's not happy which was why we settled on home HD because she has more control. I was looking for support groups anything to try to help us all a little as she has her youth worker so she at least has someone she can sound off to etc

  • Being at home could definitely help you stick to the routine she needs. Being able to set up the machine is something she could be good at, as it's exactly the same every time.

    Look into financial support. You should at least be entitled to disability living allowance at the middle rate, regardless of your husband's income.

    I suspect your hubby will begin to understand the enormity of the task you have taken on once you have settled into your routine and he can see it.

    You know your daughter best. Her youth worker is hopefully a good one. He may be able to point you in the direction for support groups. Your home dialysis team leader will be someone you can talk to. You will feel happier once everything is up and running.

  • Yeah it's the waiting that is stressful one more week til training and I'm dreading how many meltdowns I'll have to face, I've tried getting her to go to the home training room more than once over the last few weeks because it's a change again but she's been like no I don't want to. So I'm dreading the Monday. She went in the one day as we were over an hour early and he got her doing the cartridges which were nice and easy and the nxt stage machine is small and very easy to use so fingers crossed she will carry on doing it, she has planned in her mind that while its priming I go make a cuppa and lunch and she will set up, I'm just praying she has it stored in her mind xx

  • Bless her. It's daunting for anyone, without being on the spectrum. I wish you both the very best of luck.

    I haven't used the nx stage machine as it's not suitable for nocturnal, but I hear it is very user friendly. Let me know how you get on x

  • Hi I don't know about home he but just wanted to wish you well and say I am sure you find it very daunting but am sure that when a few weeks go by you will wonder what you worried about

    It must be tough for you to be responsible for your daughters care at home and I wish you luck

  • Thankyou

  • Thank you all so much for your wonderful advice and help, I spoke to our nurse and he assured me he wouldn't leave me til he knew I was 100% happy and 100% confident and that he was also 100% happy with what I was doing. Only 3 more sessions to training week, was meant to be 2 but yesterday they didn't realise the machine wasn't actually dialysing after 2 1/2 hours 😡 I said machine wasn't right as UF rate wasn't on so she came and did the machine and went off, I went to get a drink and machine had gone off again while I was away and rhi was told it's fine it's still working so I kept silencing the alarm as I've been told and watching the pressures they saw the machine however many times over the 2 1/2 hour period and never noticed so we had to do 3 more hours and her weight was still 1.4 over ( personally I think she's actually put some dry weight I as she did go down to 30kg and now they set it at 40.5 but I think it's dry weight going on still) so back again today....only they didn't put her in the transport book AGAIN !! So we are now 2 hours late and rhi is not happy at all as her time was 12:45 and she doesn't cope with being late as it changes her plans so I have one stressed out young lady who will probably give me hell sat in dialysis. They know how she gets so for her to be forgotten again really hasn't gone down well. She will be glad to be at home as she gets to decide her time