I’m interested to know if anyone else has been issued a Non Invasive Ventilator (NIV) from their Hospital to assist with their breathing and get rid of excess Carbon Dioxide that their body retains.
I’ve had 5 Hospital stays in the High Dependancy Unit stuck on their NIV machine (hate it, it’s so uncomfortable) and I absolutely hate being in hospital with a passion. One of my admissions was because I stopped breathing 3 times and they had to shock me back to life. I have a DNR “Do Not Resuscitate” in place but this is only for chest compressions as I have Osteoporosis and the likelihood they’d break ribs and puncture lungs which would inevitably kill me (this was my Respiratory Consultants advice). But when my oxygen keeps going 74 and below, ambulance has no option but to take me to hospital (which I try and fight tooth and nail saying I’ll be fine at home). I hate being in hospital, away from my tremendously loving, caring husband who does practically everything for me and my wee dog 🐾 too, I miss them immensely. And when you’re in High Dependency, you’re always in your own room with no one to talk to, it’s very lonely and at times scary 😧
The home NIV machines are terrific and much more comfortable than the hospital ones but I still hate having to wear it, I feel like Darth Vader. And at 47 years old, it really concerns me that the end may be near for me but this could just be me thinking negatively as I usually do.
I was wondering if anyone has bought their own as I’d like to,purchase one for my living room. I have to wear it all night whilst sleeping but I’m such an early riser that I don’t get more than 5-6 hours on it and I hate going back to bed during the day. Im into crafts and sewing and I could be on my NIV and be doing these things at the same time. I know some of you may suggest just move as needed but it would mean moving furniture everyday to get access to sockets, so that’s not really an option for me. Also, my husband works 12 hour shift (6am-6pm) on a shift basis, so moving furniture myself would be impossible as it’s real oak furniture we have and weighs a ton (looks gorgeous though).
Sorry if I’ve overshared but I do tend to blether quite a bit via text as it doesn’t leave me breathless.
I’d appreciate any advice, feedback and just any friendly chit chat.
thanks in advance
Pam 🤗
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lenniep
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I have a niv machine I tend to be up early so hubby brings machine down ready for the day I have 2 ttension leads one for front room . And one for dining room. Hubby puts machine on little table so I can move around rooms.
I was told by the hospital not to use it with an extension lead, that it was to go straight into wall socket. Not sure what difference this makes to be honest.
But thank you so much for your reply, much appreciated and I’ll discuss this with my hubby as it sounds like a plan to me and saves expense of buying another machine (which I know aren’t cheap).
all extension leads have circuit breakers on them these days so I don’t see why I need to just plug it into the wall socket. Thanks for the info and your reply
Hi lenniep, I’ve been using BiPAP/NIV at home for 5 years now, I like you tend to wake up early in the winter and dark mornings it’s not too bad, I can sleep about 7 hours, but in the lighter nights I tend to wake up between 5.30 and 6 am.
For the past 2 years I’ve been, going on my BiPAP in the afternoon at about 4 pm for between 2 and 2 and a half hours to make up for my bedtime hours, I don’t go to bed or sleep when I use it in the afternoon, I just go on my PC or read in my bedroom.
I know what you mean about the in patient NIV machines in hospital, they’re not as comfortable as your home machine, a lot of that is down to masks they give you in hospital, they aren’t comfortable at all they are the cheap generic ones, as for having a second machine for downstairs in your home, you would have to speak to your Respiratory Specialist, I have 2 machines but the spare one is for when I go on holiday, in case my everyday machine breaks down and can’t be fixed locally.
The problem with using 2 machines at home is, your everyday machine is connected to your hospital so they can monitor your treatment data daily, when you use your spare machine the hospital have to be informed so they can monitor your data on the second machine.
Hi lenniep, I got my spare BiPAP from my Respiratory Physio at the hospital in 2018, because I was going on holiday to Cornwall for a week and if my everyday machine broke down whilst I was away, I wouldn't have been able get it fixed, because the company who services my machine will only service it in my home area.
thanks for the info Ian, very good to know. But it took me all my Consultants times getting me this machine, I doubt they’ll give me a second one. But I suppose it doesn’t hurt to ask though does it.
I think at the time I got my spare BiPAP we didn't have dreaded Covid, so I was slightly fortunate, since the Pandemic caused a shortage of machines worldwide, also with the Philips Respironics worldwide recall of most their CPAP and BiPAP machines because their foam problems as well and they supplied most of machines along with ResMed, there is real possibility Philips Respironics going bust because of the multiple lawsuits they are facing, especially in the USA.
typical America and their Lawsuits, and why against Philips Respironics?
As I said before, I can only ask my hospital (not my local one as they were in the midst of getting all set up to be able to provide the machines when the Pandemic hit). So I have to go away into Glasgow Royal Infirmary Hospital for all my appointments and checks with regards to my machine and they were very reluctant to give me one to begin with. It was only when I stopped breathing the three times that my Consultant (who is a Professor now) emailed every high up manager for me and I got one that wasn’t being used in another hospital.
It infuriates me a times how we have to fight for everything to help us. I always do my homework and have piles of notes / questions before every appointment I have with Professor Patel. He just laughs at me and says “you do know I’ll know the majority of your research” but then I hit him with the questions and he’s like, that’s a new one on me lol. We’ve got a great rapport and I hope to God he doesn’t ever leave.
I'm sorry I have no knowledge of NIV machines but just wanted to say hi and I'm happy to chat. What crafts do you enjoy! I love a glue gun! This year I'm determined to master crochet and have a 'painting with acrylics ' workshop booked - don't even know how to hold a paintbrush. 😂
I've sewed - dressmaking,curtains etc my whole life up to past few yrs.have lost ability to concentrate etc but do miss it.i don't give up hope of getting enthusiasm back.i used to knit and crochet too x
I find it hard to concentrate on close work, like embroidery, now, it makes me tired! I have several unfinished projects taunting me. I am determined to master crochet! I tried all through lockdown, I have been to a workshop, my 'friday after yoga friends' are trying to help and I have yet another workshop booked, this time with hobbycraft. Trying a completely new craft/hobby can be good for waning enthusiasm .
I know what you mean about the concentration but I just push myself through it and once I’ve started I thoroughly enjoy my sewing. The only time I hate it is when I take the shakes and stick myself with the needle time and time again. And I do tend the turn the air blue with my selected language when it happens, being Scottish it’s just second nature to me to use that language but it’s not meant out of bad manners or anything, just how I was brought up.
I would love to be able to crochet but my wee 99 year old Aunty (God rest her soul) tried her hardest to teach me but I just couldn’t get the hang of it and my Aunty Rosa had the patience of a wee Saint so she did. She was the one that got me into sewing, she sat me down at her sewing machine when I was up years old and let me play about with it and I was hooked from then. She was a real seamstress, made curtains for her local shops and made Wedding Dresses too. She was the head of her local Woman’s Guild for years and took all the craft days and even had her photo taken with Princess Anne once when she visited Bishops Tawton down in Barnstaple in Devon. I miss her so much, she was such a beautiful person inside and out and had a pure heart of gold. But I know I’ll see her again one day when my time comes. I often dream about her as if I’m having real conversations with her and she was a very spiritual person, so sometimes I wonder if I really am speaking with her. Does that make me sound like a right loon ball saying that?
so do I, I miss my Dad so much too. He died 14 years ago from COPD and the similarities I’m starting to see in myself when he was nearing the end is frightening the life out of me. I’m petrified to suffocate to death and I’m nowhere near as brave as my Dad was
Please don't be frightened. Care has changed so much, and is changing all the time. We were with my Dad, at home. He was surrounded by his family and love was palpable. It was a peaceful, beautiful time. But, with care, I think we have a while to go yet.
I have a sewing machine and like to dabble a wee bit in making altering and making the odd wee thing. I used to make my own curtains years ago but find dealing with all that fabric too heaving going now, so it’s just wee things I make now. I have the best dressed wee dog in Motherwell, Scotland (but I’m sure he’s none too pleased right enough lol). I make cards too, I thoroughly enjoy crafty things, keeps my mind busy. I love jigsaws too, the bigger the better. I’m working on a beautiful Thomas Kinkade one at the moment.
Basically anything I need a needle and thread for I love it, I just love sewing. When I was much younger and fit and well, I went to a dance school and had to make my own costumes which I loved, I always got the jealous looks from the other lassies because mine was always bedecked in as many sequins as I could sew on.
I’m no good at art or drawing but I wish I was. So good luck with your class.
Gosh you've done so much! I used to make household stuff and clothes, especially for my daughter. I didn't really enjoy making costumes for the dancing shows, to many of the same thing, 17 pairs of bloomers for example! Im enjoying decoupage at the moment. I'm trepidatious about the art class as I can't draw!
it’s just the hospital ones that I find so uncomfortable. My home NIV is much more comfortable but I just find it’s just providing to me that my condition is getting worse and it just scares me that all.
Hi Pam 👋 I’m on NIV after 4 admissions to hospital and the uncomfortable masks. Like you hate and will do anything to stay out of hospital, I have mine on 24/7 I was given one (loaned) and also a portable one (lasts 2 hours) from northwest ventilation at Wythenshawe Manchester they service them and are really looking after me. I’ve had them 2 years now I manage to do most things wearing my mask I can even drive in it. It’s not a death sentence and has kept me out of hospital for the full 2 years I had a choice of masks and chose a nose one so I can still eat drink and talk my blood gases have been excellent since having my nivvy. I hope your hospital can supply you one and you go on to live a longer life than you anticipate. Good luck 🤞 x
thank you for your reply Amelia. I’ve never heard of portable NIV’s before but as I’m a mouth breather, I need the full face mask. But as they say, everyday is a school day. I will speak to Glasgow Royal Hospital when I’m next there in April and hopefully (fingers crossed) I can get another from them for travel as my husband and I like to visit log cabins and take the dog with us. He needs his holiday too after all. We will possible go another cruise also but I worry about getting ill on board (it would just be my luck) but as I’m now no longer allowed to fly due to low oxygen levels, cruising is the way to go now.
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