I am very open talking about my disability and the way it impacts my daily life. But I rarely get asked what life is like with a ventilator and tracheostomy. I don't know if it's because people feel it is rude or inappropriate to ask about but I thought I would share my experience and answer some of my followers questions about it.
My experience
When I was 15 and living in Chicago, I contracted the swine flu. After three months in hospital I realised the only way I was going to go home that was with a ventilator and a tracheostomy. I didn't grow up using any kind of ventilator so this was completely new territory. I was used to regular chest infections that would land me in hospital, but I never needed any support with breathing outside of this. Despite the best efforts from my medical team, the strength I lost from the swine flu meant that permanent ventilation was now necessary. The choice to do this via a tracheostomy was largely because my muscles used to breathe and cough were extremely weak and a tracheostomy means my airway can be cleared when I need it. I'll explain what that looks like below.
What is the difference between 'invasive' and 'non-invasive' ventilation?
Using a ventilator through a tracheostomy is known as 'invasive' ventilation. This is because there is a foreign body surgically placed in the person. For me, this is a small silicone tube that sits in my windpipe (see above). 'Non-invasive' ventilation is using a ventilator through a mask that covers the mouth, nose or both. There is a strap that goes around your head to hold it in place. This is called 'non-invasive' because it can be taken on and off and doesn't require any surgery.
Did you ever consider non-invasive ventilation?
Yes, I did. For a long time in hospital with swine flu, I tried to come off of the ventilator and eventually only use it through a face mask. I personally hated it. It felt like a harsh wind tunnel blowing in your face all the time. I also found the mask really uncomfortable and it was very difficult to fit it without air blowing into your eye! But this wasn't the only reason I didn't get on with it.
As I mentioned above, my muscles have always been weak but were made even weaker after the swine flu. This meant I wasn't able to cough up any of the mucus in my lungs which can lead to a nasty chest infection or a blocked lung. Having had both I can safely say neither are pleasant experiences! With a tracheostomy, you are able to insert a small tube to suction out any mucus.
Being able to suction my airway has been an absolute game changer and a silver lining to contracting the swine flu. I used to be admitted to hospital at least once a year with a bad chest infection, but since being able to suction, I have only been in hospital once in 13 years!
Is it hard adjusting to the tracheostomy and does it mean you need skilled nursing 24 hours a day?
The biggest adjustment after getting the tracheostomy was that I now need a 24 hour care. If you listened to the podcast episode with my childhood best friend, you'll know that I was very independent growing up. My friends provided a little bit of care that I needed like holding a door open, but I never really needed a carer or a nurse. As a 15-year-old who liked to be independent this was really difficult to get used to. Over the past 13 years I have gotten used to having someone nearby who is able to suction me at any moment. I could need sutioning once in a day or over 20 times depending on a variety of factors so I always need someone close at hand.
This definitely does not need to be a nurse though. I have had carers with no previous experience be trained on how to suction. When I was 16 my best friend learned so we were able to be more independent - for those of you asking, yes this was Lanie! Some of my friends in the UK know how to suction as does my whole family.
Did you ever consider a nursing facility?
No. I understand why this might be an option for some people but it was never an option for me. While a nursing facility does mean you always have trained staff around, it does mean you aren't in your own home. I was 15 when I started needing 24 hour care so it made sense for me to have care at home and for my family to learn how to provide care for me.
How much admin is involved?
When a friend asked me this I asked her did she mean day-to-day care or hospital appointments. She said both so here we go! Day-to-day I need to change a dressing around the tracheostomy and suction my airway but that is pretty much it. It doesn't take up very much time and once you know how to keep it clean, it is very low maintenance.
In terms of appointments, I see a consultant at a respiratory hospital once every six months to check the ventilator is working as it should and to check if I have any concerns. Having done this for 13 years and having a mom who is a GP, I am pretty self-sufficient! I know you can look at a person like me I have and assume they are constantly in and out of a doctors office and have a million and one medical concerns that need to be addressed. But to be honest I have never been healthier than since I got the tracheostomy.
What do you wish people knew or understood about it?
I wish people didn't think it was such a big deal or freak out when they see it. I think people assume I am very medically fragile or have a much more serious condition than I do. I'm not going to die if I am not on the ventilator for a second. I need it to allow me to live my life in the way that I want, as a busy productive person.
I understand why a ventilator and tracheostomy can be strange to some people, particularly if they've only seen it on TV in extreme medical emergencies. But it is important to remember that a lot of people use ventilators for things like sleep apnoea. I use mine because I have a muscle wasting condition and contracted a very serious illness that I have never fully recovered from.
I also wish people would ask me more questions about it. People are not shy asking disabled people why they use a wheelchair so why does no one ask me about using a ventilator with a tracheostomy? Of course there are polite and impolite ways of asking, but I would rather people ask me about it if they have questions.
There is a film called Breathe which tells the story of Robin Cavendish who contracts polio in 1958 and then leaves hospital with a wheelchair and ventilator. It is an incredible movie but there is a scene where people stare at him with a look of horror as he leaves hospital with his gadgets in tow! I have to admit I sometimes feel things haven't really changed.
I'd really like to answer more questions about this so please let me know if you have any and I'll do part 2. I'm also happy to speak one on one to anyone considering invasive ventilation.