Breath of Fresh Air
For a long time I had known that the likelihood of needing nocturnal ventilation was pretty high for me, as an adult living with SMA. But like most people I put this in the ‘too hard basket’ for far too long.
Reluctantly, I started my CPAP journey just before Christmas 2019. I was very scared and nervous, but once I admitted to myself I needed the support and tried to switch my thinking from “this is too much hassle and I won’t cope” to “I can do this”, things started to get better.
What was I scared of?
I had previous experience of CPAP, my late husband Danny had CPAP for the last 5 years of his life. So I knew a fair bit about what is involved. Although it had helped him enormously, a power outage led to him suffering respiratory distress and this was a terrible trigger for me and led to me resisting going down the CPAP path a second time.
I am also a very sensitive person to discomfort and noise; I was convinced that I could not fall asleep with a weird mask on my face and the noise of the machine whirring away. Somehow needing help to breathe signalled decline and progression of my neuromuscular condition. I talked myself into being in denial.
How did I know it was time?
My neurologist referred me for a sleep study in 2017 and I had a feeling the results wouldn’t be great so I went into denial mode and actually never went back to the respiratory clinic! I said to myself things like “if it’s that bad they will contact me” and “I will know when I have symptoms, and I’ll follow up then.”
For about the last 3 months of 2019 I was waking with headaches, falling asleep at the computer and TV and just felt continually tired and unrefreshed, especially after long sleeps! My chest health hadn’t been very good, I had regular chesty coughs and waking with a runny nose, but I didn’t seem to have an infection. The catalyst was one morning upon waking from a bad dream, I was breathless, crying and it took me quite some time to settle down. I knew that I had sleep apnoea and the time had come to do something about it.
I got up the courage to admit that to myself, my family and my support workers, and I contacted the respiratory clinic for an appointment. They got me in pretty quickly where they take your blood pressure and oxygen levels and blood gases (ouch). Make sure you get the anaesthetic cream on as early as possible before having blood gases taken as it can be painful. But basically the Respiratory Physician needs a current analysis of your nocturnal breathing patterns.
What was the process of diagnosis?
A sleep study is a bizarre experience. You go into hospital for a night and they wire you up with all sorts of monitoring apparatus in your head, chest, even your legs. There’s a camera and microphone on you and an oxygen thing on your finger so it’s not very comfy. But all the bits and pieces give a full picture of what happens when you are asleep. Ironic to think they are testing your sleep when it’s so hard to get any sleep being in such a noisy environment with so many unfamiliar things in bed with you!
A week later I had another clinic appointment. The respiratory physician was pretty blunt in explaining that I have significant sleep apnoea and my oxygen levels drop too low, especially in deep sleep. He strongly recommended I start automatic CPAP therapy immediately.
What helped get me on my way?
Being told treatment is urgent actually gave me the push I needed. Otherwise I would have kept putting things off. So the week before Christmas I started with CPAP, with a nostril pillows mask. I’ve found some good reassurance, advice and support from:
- the respiratory clinic (especially the physios)
- talking with men and women at MDNSW
- online Facebook groups called Sleep Apnoea Forum and CPAP Users Australia
- by talking with others in the SMArties group (others with my condition SMA)
- the equipment supply guy – CPAP to Your Door! Can you believe you can get CPAP home delivery!! He visited me at home the day after I tried out masks at the hospital, and was compassionate, knowledgeable and helpful.
I bought my chin strap (to stop me mouth breathing) but am renting the mask and machine as a trial. All claimable on my NDIS plan as I made sure I put respiratory health as a goal, and fully self-manage my funding. From October last year CPAP related equipment and consumables can be covered by NDIS.
Of course my friends, family and support workers have been encouraging, but what really helped was when I said to myself – I can do this!!
What were the challenges and how did you overcome them?
- Training support workers – It’s a bit tricky when you have 5 different people putting you to bed. I found taking photos when it was on correctly helped so I could get them to make sure the chin strap and mask are in the right position
- Noise and getting off to sleep – the new machines are super quiet and when it’s on you don’t really notice – it’s actually a bit soothing to hear the mild rhythm
- Comfort and adjusting my sleeping position – at first this was tricky as I sleep on my right side all night, every night. At first when I moved my head the mask strap would move and loosen, so I got leakage of air which is most annoying. But like anything I have adjusted, tightened the straps, grabbed a new pillow to support my arms (so they don’t fall over my head as much) and just need to watch the pressure on my ear (push the mattress down where my ear it to release it from being squashed)
- Skin irritations – a couple of times the nostril pillows have dug into my nostril and made a small sore. I tried paw paw cream and betadine which did the trick. The nose seems to have gotten used to the pressure and not so sensitive now
- Keeping the nose clear – one of the main things to watch when you start ventilation is keeping your nose clear. The doctors suggested nasal cleansing with a saline spray and allergy spray, but I found they actually irritated me more than helped me. I just have a good dig around to remove anything before putting on the mask!
Has it helped?
After 6 weeks, I am pleased to report I have persisted and worked through the teething problems (still early days) and most nights I am sleeping through with the machine (I call him ‘Feel Good Phil’ as it’s a Philips Dreamstation, LOL). I feel so much better and no more headaches and sleepiness during the day. My chest has been clear since starting this therapy whereas before I was often waking with rattles, runny nose and coughs.
The technology is so advanced that I have an app on my phone and each day I can see how long I used the CPPAP, my AHI (sleep apnoea score) and pressures used. My AHI has gone from 72 (times I stop breathing) to an average of 12 so that says it all! Although aiming for 5 or under, my sleep apnoea has reduced significantly but I may need a BIPAP (set levels of pressure but very similar set up) in the future. I feel very proud of myself as I really thought this would be really hard and I would hate it. I’m pretty pleased to know that I have the perseverance and problem-solving skills to get through this first challenging phase!
I am back to the hospital clinic in February, another sleep study with the CPAP on and spirometry testing so it’s a bit of an ongoing process to get the right levels of pressure for my lungs. But I am not scared any more, in fact I feel empowered that I have taken charge of my health. I know this will extend my life and absolutely improve my quality of life. I am now an official member of the CPAP club, and it’s like a breath of fresh air!