I have had to make a few fairly big decisions since I first got sick, decisions no “normal” young person should have to make. Some of the choices I made might have changed my life and some of them did.
When I had my heart transplant I was left with consolidation in the bottom of my left lung, this along with my medication left me prone to developing a lot of chest infections. As my condition progressed over the years I started having difficulties with my breathing so any chest infections I got put me in danger of developing pneumonia or worse. It was on an admission for one of these chest infections where the subject of a tracheostomy was first broached. I had been asked to see the doctor with my Mum as he wanted to have a talk with us. During this talk I was asked if I ever got s0 sick with a chest inefection that the doctors had no choice but to give me a tracheosmy would I be willing for them to do so? Would I give them consent? I gave them permission to do so on such an occasion, secretly believing that of course that would never happen.
The second time I heard the word in relation to myself was a a year later when I had transitioned from pediatric to adult services. I was in hospital for an over night study to see what changes might need to be made to my biPaP machine (the name of my breathing machine) as I had been using it more frequently. I ws told that as I was on very high settings the next step might be a tracheostomy. I was asked to think about it at home.In 2012 I was using my biPap almost 24 hours a day so the subject was put to me again. I made the decision. A trachesotomy was the best option and a date was set. I went in on the 12th July and spent my 18th birthday there.
I’m not very good at making decisions I’m one of those people that likes to put it off for as long as possible. It’s not something I would advise though especially when it’s a decision about something that could be potentially life changing.
I don’t regret choosing to have my tracheostomy on my own terms. It’s given me a better quality of life. I wish I’d asked more questions and learnt more about it before hand, but that’s my fault I was given the time to think things through and yet I didn’t use it wisely I chose not to think about it until the day, That is the thing I regret. I always leave things until the last minute.
Daniella x x
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