Viewing 11 posts - 1 through 11 (of 11 total)
  • #154959
    Breathing getting worse

    Hello. I’ve got Spinal Muscular Atrophy and have used a wheelchair all my life. I have attended mainstream schools, college and had numerous jobs. Around 20 years ago I started using a Nippy machine for my breathing at night and recently have been using it more in the day. Over the last two weeks I have had to use it almost all the time. and I’m wondering if what I have dreaded for years is finally happening – am I going to have to constantly wear a mask and how do I cope with this when out with friends and in my active life as a volunteer in the community? Has anyone else any tips please?

    LeahurstPIP
    Participant
    Posts: 4
    Joined: 27/04/2014
    #154992
    Reply To: Breathing getting worse

    Hi and welcome to forum.

    I myself started Bipap 23 years ago and like have steadily increased daytime usage over the last 6 yrs.

    Your recent sudden increase of usage could be due to the weather we are having. I would request a check for both yourself and the ventilator. My last big phase of vent dependency occurred just prior to a fault in the vents motor so can only assume machine wasnt performing well.

    As far as day time use in public. I dont yet use myself out the house other than away on holiday if weather too warm.

    Some users use something called sip and puff. its basically a straw like attachment that releases a breath as and when you require it by holding straw to lips. I gather it takes practice. There is a Facebook group called breathe with Md with many users who use the method.

    Another options might be frog breathing. which is a physio learnt method of staking breathes.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #154994
    Reply To: Breathing getting worse

    Hi and welcome!

    I started using bipap at night aged 15 – I’m now 40 and over time my use has increased to the point I wear it all day too. It has been a gradual process and was perhaps brought forward by a few health events but for me, the quality of life it have me wearing it out and about, helped me come to this decision.

    I think my family were concerned about this to start with, saw it as me giving in perhaps, but I am still confident it was the right decision. I didn’t enjoy many things anymore and got more and more tired from struggling. The wearing of the mask was a mental hurdle I had to get over and was made so much easier when I changed to nasal pillows – people could see more of my face and soon got used to it. As Catatude said, there is a sip-puff option that many get on with successfully. My posture and increasing neck pain played a part in using the vent more. I did not have the ability to keep my head up, body balanced and breath at the same time, certainly not efficiently and I didn’t want to go out.

    I echo what Cat said about time of year so it may be a factor. There are a lot of strange viruses about that cause extreme fatigue. I am aware that everyone’s situation is different, we often say that we are the best experts in ourselves. Go with your instincts. Maybe keep a diary of respiratory function each day and what you are doing. Weigh it all up. I have not had a hospital admission for over 10 years and can manage for short periods without vent depending on the situation.

    Please feel free to ask questions. I’ve gone on a bit lol

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #154996
    Reply To: Breathing getting worse

    Thank you, both of you. It’s really helped knowing of other peoples experiences. I will look at the Facebook page. I’ve never heard of the sip and puff method, or frog breathing but I will definitely find out more. I don’t have a physio just a Home Ventilation Nurse Specialist who comes if I ask her. She’s been recently but more or less said there’s nothing sinister going on.

    I was told I had had a virus but I’m not sure I had. I have been getting gradually worse but it got suddenly worse just in a couple of days. I’ve been told not to panic as it makes it worse but that’s really difficult when you can’t breathe as I’m sure you know! I’m trying to wean myself off the nippy, trying not to get dependent on it but I don’t know if it works like that. I use a mouthpiece during the day and nasal pillows when it gets really bad although I haven’t had the confidence to use the nasal pillows out and about. Do you have problems with the alarms? I’m worried I won’t be able to go to meetings, talks, or shows anymore because the alarm goes off every time I switch the machine on or off! I’ve asked to have them switched off but was told they are there for a reason although the nurse has tried to turn them down but it hasn’t made any difference. I use a handheld switch but can’t turn the alarm off from this.

    I feel better having someone in the same situation to talk to, thank you both of you. It makes a huge difference knowing I’m not alone. Don’t worry sar78, you can go on as long as you want!

    LeahurstPIP
    Participant
    Posts: 4
    Joined: 27/04/2014
    #155001
    Reply To: Breathing getting worse

    Can I recommend a Facebook group called Breathe with MD. It is a fantastic resource in itself as well as a great place to get support and share experiences.

    I have never used the nippy so I’m not able to comment on the alarm issue but re. The meetings, if anything I’ve found my voice is clearer and louder because I’m using my vent. We are all different so what works for someone won’t for others. I am able to talk and eat no problem using mine.

    I do remember that periods of illness or fatigue would lead to more vent use and it can take a long time to get back to where you were. Don’t struggle but be mindful and a bit more time off when you feel able perhaps.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #155003
    Reply To: Breathing getting worse

    Thank you. I’m not sure what a vent is? I thought there were only Nippys, I learning more and more and I’ve looked at Breathe with MD and its very informative. Thank you.

    LeahurstPIP
    Participant
    Posts: 4
    Joined: 27/04/2014
    #155007
    Reply To: Breathing getting worse

    Vent is short for ventilator all machines be it Nippy stella, trilogy etc are all just models of companies like Resmed etc.

    I use a nippy and its alarm can be paused by holding the bottom right button.. out of all the vents ive had its the least likely to alarm so your alarm setting may be very sensitive.

    Where as I wouldnt recommend turning off the alarm overnight for safety reasons as you need it to alarm if you lose power. I would explain to the nurses that you need a to be able to disable or mute alarm when at cinema or meetings.

    When I first got my Stella model vent it alarmed every time i spoke. but was easily adjusted.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #155034
    Reply To: Breathing getting worse

    Thank you. The nurse has turned it down but it’s made no difference – I will try asking again!

    LeahurstPIP
    Participant
    Posts: 4
    Joined: 27/04/2014
    #155037
    Reply To: Breathing getting worse

    I would be interested to know why it was turned down. I would have imagined that a doctor or consultant would be more appropriate to make such a significant decision.fff

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #155039
    Reply To: Breathing getting worse

    I would be interested to know why it was turned down. I would have imagined that a doctor or consultant would be more appropriate to make such a significant decision.fff

    hi Embayweather

    In my experience the Respiratory Nurse sister can make small adjustments to the Ventilators running and function.

    Some of these functions are completely separate from what we call the Machines prescription that is normally calculated during or after a monitored sleep study. But as I say Nurses can and do alter settings like rise time, trigger and the alarm sensitivity.

    cat x

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #155042
    Reply To: Breathing getting worse

    Thank you so much for the explanation Cat. I have not yet needed such augmentation, but I am sure it is in my future. I was basing my comments upon what happens around here, which currently seems to be not a lot unless aforesaid GP or consultant allows it. I know the struggles we had to get my Dad some help before he died, partly form MD I am sure, and his struggles to breathe.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
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