Needing to use my NIVI Machine more to help me breath.
Good afternoon everyone, lately I have been feeling as though I need to depend on going on my NIVI machine more through the day as well as over night.
I find it far more difficult to breath when I am not using it. I have spoken to my respiratory team and they have said if you need to go on it more feel free if it helps you.
Does anyone else ever feel like they need to use it more? Thank you all in advance.
Kind regards as always.
Joseph
Hi. I was in hospital last year with pneumonia I had always used my mask once a day. In hospital I was on it several times a day. They said to carry it on at home I use it several times a day for a couple of hours a day.
Hi Joseph,
I don’t really have to use my Bilevel machine more, but I do use it for a couple of hours in the afternoon because I like to use for at least 9 and half hours a day, at bedtime I get into bed at 23.00 and I’m always up by 6.45.
I do get up a few times a night for the toilet, so I sleep about 7 hours a night and the couple hours I use it in the afternoon I don’t go to bed, I wear whilst I’m on my PC in my bedroom, this helps me get rid of the Co2 in my body because I’m a Retainer, which is caused by Scoliosis which I was born with, this causes my lungs not to function properly and I have trouble with gas exchange in my lungs.
I remember when I was first given my own machine to take home, the Respiratory Specialist told me to try and use it and sleep 8 hours a night, he also told me if I needed a lie down in the day to use it then as well, so yes as you’ve been told if you need it there’s no harm in it if it’s helping you.
I hope I have been some help.
Ian.
Hello Joseph260268,
I have severe asthma & expiratory dynamic airway collapse. I use humidifier cpap autoset.
I have been finding that I use more in day if I'm more fatigued or more breathless.
The worser times are heat depending, weather or depending what I have done day before.
If you haven't had a recent review by your sleep and ventilation team that would be a start.
As I know they picked up my periodic limb movements, low iron & other condition medications could be a cause e.g. analgesia.
Also I ended up in hospital with a severe life critical asthma attack, everything was looked at and the cpap was changed as it wasn't being effective.
Hope this helps
Yes,I do.i get tired + 02 drops.it certainly helps x
Hi Joseph, sorry I can't help with your query (I'm not even sure what a NIVI machine is) but hope when you do use it more it helps🤞Keep us posted❤️xxx
It's a Non Invasive Ventilater Nula2.There's Cpap,which pressurises air into lungs when needed and bipap= pressurised air on inhalation+ exhalation.theyre life saving equipment
Hi Patk1, yes NIV is Non Invasive Ventilation, these are BiLevel machine’s BiPAP which is a copyrighted by Philips Respironics and VPAP is the term used by ResMed for their BiLevel machines, the NIV machine I use is a ResMed VPAP.
BiLevel machines operate on 2 separate pressures IPAP when you breathe in and EPAP when you breathe out, the IPAP pressure is a higher pressure than the EPAP pressure, my pressures are IPAP 28 EPAP 10, this means because NIV machines are used at much higher pressures than CPAP, most CPAP users pressure is between about 8 and the highest is around 15, the CPAP machines can be set up to 25, but they are never really used that high because, if you used it at a pressure of 25 that is one constant pressure, even when breathing out for that reason the higher pressure into the 20s you need, you would be put on BiLevel NIV rather than CPAP because BiLevel reduces your pressure on Exhilation.
Ian.
Mine are Phillips respironics bipap niv.my pressures currently are 32+10, for respiratory failure type 2,which I've had for a long time.theyre certainly marvellous pieces of life saving equipment.i know when I've b to sleep without it.it certainly takes personal commitment to persevere+ get used to,but to anyone offered niv,do persevere - there are other masks,if not comfortable + hospital can adjust pressures if u struggle x
Yes I’m similar, I was diagnosed with Type II Respiratory Failure in April 2017 and put on oxygen 24/7 1 Litre, I was also told I needed to be on BiLevel at home, but I was in hospital for a week and sent home just on oxygen, I was also warned I couldn’t go over 1 Mitre of oxogen at rest because I was a retainer and it would be dangerous for me, I could go on 2 litres for walking and in the shower, but wasn’t able to exercise.
This went on until October 2017 when I discovered my Oxygen SATS were middle 70s at bedtime, I was then sent a Sleep Study test to do at home and was then decided I needed BiLevel NIV for bedtime as well as oxygen, but to get the BiLevel I would have to go to another hospital to stay overnight and have it set up for me because my local hospital doesn’t give out BiLevel only CPAP machines, but this would probably not be done before February 2018.
A couple of days before Christmas 2017 I became really ill again and was blue lighted to my local hospital and admitted back to the Respiratory Ward, I was put back on BiLevel again because my Type II Respiratory Failure had come back again, the BiLevel got me to a level to be able to go home again on Christmas Eve because the ward I was on was basically running down for Christmas, but I was told if I was unwell again to go straight to A and E, I was fine over Christmas but on New Year’s Day I slipped back again and was admitted to the High Dependency Unit and treated with intravenous antibiotics and a nebuliser because the HDU didn’t use NIV machines only Full Ventilation machines, I stayed there for three days and then re admitted to the Respiratory Ward, where the Respiratory Specialist I was under said I wouldn’t be going home without my own NIV to go home with, for this to happen the hospital I would normally have to go into would liaise with my current hospital and bring the NIV to the hospital I was in.
They brought me my ResMed VPAP NIV to me after about 5 days, I then had to just stay in overnight to monitor me on my own NIV and I went home the next day, it did take me a few days to get fully used to it, but is now second nature putting it on in the afternoon and at bedtime, it can be a bit harder on the hot summer nights, but I really wouldn’t be without it.
I don’t envy you being on IPAP 32 and EPAP 10, that makes mine Pressures sound feeble.😀
Ian.
Crikey! U were messed about!om glad u manage well.yr pressures are v similar to mine.did they tell u that u need to insure it on house insurance,for home & away?
Yes I cope fine, but the past few days the heat at bedtime, even with my fan on has been quite oppressive, but generally it’s really helped, I’ve gone from 24/7 oxygen to now I only need oxygen for walking and exercise, I was still on oxygen through my NIV at bedtime, but I was able to come off that a year ago now I just use my NIV at bedtime.
And no, I wasn’t told about insuring it at home or on holiday, I was actually given a spare NIV by my Respiratory Physiotherapist before I went to Cornwall a few years ago just in case it broke when I was away, when I’m at home I just call the local Service Engineer and they fix it or swap the machine on the same day, if I was going abroad I would cover under my holiday insurance, but I haven’t been abroad since 2016, we were going to Tenerife in March 2020, but then the world was locked down because of the Covid Pandemic unfortunately.😟
Ian.
I get a very sore lung that gets worse if i cough , it sometimes closes up so i can't get a breath in more than through a flat straw.
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