What is a tracheostomy?

Hello everyone I hope you had a Lovely bank holiday. This weekend, I went to a completely different place and it was beautiful. I’m writing a blog post for that but that’s still on going so I thought I would do a more educational post for now. So what is a tracheostomy anyway you’re probably wondering. So a tracheostomy a little plastic tube that inserts into your throat to where your trachea is. I know brutal right? There are so many different types out there for example, a cuffed tracheostomy, incurred tracheostomy, fenestrated tubes and so on. All of these different types do different things and guess what they even do metal ones! I mean how painful would that be when ever you change it. Yes that’s right you have to change the tracheostomy every once a month. It has to be changed regularly or when necessary due to various factors like routine maintenance, tube blockages, or changes in the patient’s condition. Regular changes help prevent complications and ensure optimal airway. But for me I have to do it every 3 to 4 weeks as I can tell when I need it change. The symptoms I experience are

• Frequently coughing
• Chest tightness
• Feel down like I’ve got a cold coming
• Body aches all over

So basically cold symptoms. You see I have a cuffed portex tracheostomy. This means that due to the cuff unfortunately I have lost my voice and that is definitely the hardest part. You see because I couldn’t swallow due to my surgery, I had to have a cuffed tracheostomy to help protect my airway so that my secretions running down my lungs. So I had to have other ways of communicating like mouthing or typing. I do have text to speek on my phone I absolutely hate it! Because it’s not my actual voice you know and to be honest with you I don’t know why it annoys people so much that I don’t use it I’ve got enough on my plate with that. But yeah I just hate it so I just type if someone doesn’t understand me it’s easier and my preferred way of communicating. So now I will be talking in depth details of what it’s like living with a tracheostomy and my experience the good and the bad.

What’s it like living with a tracheostomy? – my experience.

So I’ve been living with a tracheostomy for 9 years now and I tell you now it hasn’t been easy at all. I was 13 when I got it and my parents had to go into all sorts of training learning how to take care of me like CPR training basic life support. They had to receive certificates to. It’s was a long road back in the day. When I first had my tracheostomy I was ventilated 24 / 7. I was so dependent on that thing and my mental health was so high back then to. A few times I remembered that sometimes people like nurses and carers didn’t hear my ventilator beeping where it had come of. One time this happened it lasted for about 5 minutes. I couldn’t breathe and that was honestly the worst feeling ever. This then gave me really bad panic attacks every now and then but most of all anxiety.

When you’re living with a tracheostomy you can’t go out with your friends alone unless they are trained, you have to have someone with you all the damn time and it’s honestly frustrating. At college right now I have to have specifically trained HCAs to be with me all of the time and honestly I don’t mind but I do mind at the same time but sometimes I can’t stand it at times.

So due to me not being able to cough up my secretions properly I have to have something that’s called suctioning every once in a while which helps bring mucus up from my lungs and clears out my chest. There’s a specific measurement that we have to go down to and if you go down any further, it will cause trauma and infection. Don’t get me started on how many times a carer has gone down more than the amount. But I’ll get to that in a bit it’s honestly so scary.

My experience with complex care agencies from the NHS?

God what a nightmare it has been for the past 9 years. My family and I have gone through so many different care companies that I can’t even count them all. Right now we are with a company called Universal Complex care. I mean there decent enough but we’ve definitely had worse. We’ve had people come in who have no idea what there doing. We’ve had people turning down my SATS monitor alarm just because it was alarming. I mean how dangerous is that. There’s a reason the monitor was alarming I could’ve died for all they no. Carers have to stay awake at night you see but we’ve found so many carers asleep it’s ridiculous.

So we had to install a camera because we trusted no one absolutely no one. Of course we told them and by then we caught thousands of them asleep. It has taken so long to get to where we are today.

Living with a tracheostomy isn’t easy, but I’m learning to take things one day at a time. Some days are hard, but others are better—and I’m thankful for those. This journey has changed my life, but it hasn’t changed who I am. I’m still me. If you’re going through something like this, just remember—you’re not alone. We might breathe in a different way now, but we’re still here, and that matters.