Thinking about the future
Now that you’re up and running and gaining confidence with your NIV, it is important to start thinking about how you will use it in the future.
Using a machine to support your breathing can seem like a daunting change to daily life and it can take a while to adjust to having NIV as part of your routine. People may also have concerns about using the machine and how it may affect the course of their MND.
Some people worry about becoming “dependent” on their NIV machine. However, using NIV won’t weaken your breathing muscles, but may well bring you the comfort and refreshment of a good night’s sleep. You may choose to start using NIV during the day before activities that leave you feeling short of breath – like gardening, shopping or going for a walk. You are in control – make your NIV work best for you!
As time goes on, you may wish to use it more in the day and indeed some people will start to experience breathlessness more often during the day. You can wear your NIV for as long as wish – and some people may use it up to 24 hours a day. This is where a choice of mask is useful – you could use a smaller, less obtrusive mask (e.g. a nose mask) – allowing you to talk and eat much easier.
Other people decide they would rather not use NIV during the day – this is very much a matter of personal choice. The key thing is that anyone using NIV has all the information and support they need, so they can find the way that suits them best. Do talk about your thoughts and concerns with your Care Centre team. Breathlessness can also be helped using medication – whether you are using NIV during the day or not.
Thinking about the future
As well as working out the best routine for using your NIV, it is important to consider what happens when you are not so well.
Chest infections can be a bit of challenge on NIV, but it can still help you. You should still try to use it as much as possible to make sure you are resting and sleeping well. The addition of a humidifier on your machine may help if you are experiencing a dry mouth or throat, or if you having difficulty coughing. If your chest infection doesn’t respond to oral antibiotics, going into hospital for intravenous antibiotic treatment (through a vein) may be suggested. However, you may not want to come into hospital and wish to carry on with tablets at home. It is worth talking about such possibilities in advance with your care team and family, so you have an agreement of your treatment preference. This can be written in your notes.
In addition to this, it is a good idea to talk to your health care team about writing an Advanced Care Directive. When you start using NIV, it can be a good time to begin such discussions with your care team and family. This tells those looking after you now – and those who may look after you in an emergency – what your wishes are regarding your medical treatment. Many people take comfort in planning how they want to spend their last few days, even though this may still be some time away.
Some questions you may wish to consider could include:
- If I become poorly, do I want to go to hospital or have treatment at home?
- If I become more breathless what are the options for making me comfortable?
- If I want to stop using NIV what are my options?
The staff at your specialist centre, the community team or your GP will all be able to support you to make choices you understand and are happy with. These choices may well change over time and you can of course change your Advanced Care Directive as you wish to.