It literally has been days, weeks and months since I last blogged. This is mostly because I’ve simply been too exhausted, to tired and too ill to sit and write what I hopefully am doing right now.
Without reading back, I wonder if I had mentioned I was suffering breathing problems? Pretty much from October 2009 through till late August 2010, I suffered from what I now know is called strider. It’s the sound that comes in relation from a narrowing in the throat (stenosis). To ignore the medical terms, and to listen to me, I sounded like Darth Vader. Add this breathing noise to the sounds of using the crutches and it really like I’d walked off the set of a Star Wars movie. Anyhow to catch you up quickly, I had ended up down at the local hospital one night with difficulty breathing. Not just noisy breathing, but the actual process of moving air into my lungs, much like an asthmatic. This prompted an outpatient appointment with ENT (ear, nose and throat) at the Alfred hospital 3 months later. Once I was seen, and the young registrar had numbed the back of my nose, and inserted a camera up it and down the airway, many names were screamed. Not swearing from my mouth but the registrar yelling to other doctors to quickly come see what this young doctor was seeing for the first time in his career. I think I better explain this in the most basic way I know how:
A normal airway is roughly 10cm wide (the purple area on the picture above), and when I was scoped the young registrar saw a narrowing in my throat (just below the vocal cords) of 4mm in the trachea. This was life threatening. I was very quickly looked at by every single ENT doctor, as many up to 6 at a time lined up to have a look. I should have been dead. What I was experiencing is so incredibly rare in an adult, especially one that is a) still alive and b) moving around on crutches and talking! A “sub-glotic stenosis” is more commonly found in premature babies, when their throats don’t develop properly. This is why I caused a crowd.
I was immediately passed on to the head of the team, the head doctor and listened in shock as they explained I needed emergency surgery, they would need to perform a tracheotomy (where they slit the throat open to gain access to the airways). I was moved down to a re-suss bay in Emergency as they tried to secure a bed in ICU until they were able to operate. They needed an operating room available, and while I needed emergency surgery, they could manage my airway until then. However while down in emergency, the situation turned even direr and my airway decreased to 3mm. Within 5 mins, the whole team of ENT doctors came down, had a look down my throat again and I was told I would be in theatre within half an hour. Most of this information passed straight through me, as I was in shock. My mother was signing forms for them to do what they needed to keep me alive, and as I heard more, the more distressed I became and my breathing became even more difficult. I was rolled into theatre where there were at least 25 doctors, a dozen nurses and 2 anaesthetists. They spared me a tracheotomy (thank goodness!) and used a balloon like device to burst through the tissue that had formed, which was causing the narrowing/stenosis. Once I came round in recovery, I felt as if I had tonsillitis, pharyngitis AND laryngitis! And by that I was in an incredible amount of pain, and I couldnt even swallow. It felt like razor blades had cut me up inside. My throat was so raw and I spent the night in the HDU (similar to ICU – High Dependence Unit). Anyhow I was released the next day and had to go vote! That was the last thing I wanted and I couldn’t even enjoy a sausage afterwards. :(
To cut the story short, I have been having check ups every 4 weeks since, and since that fateful day in august, I have needed an operation every 8 weeks (20th of August, 28th of October & 16th of December 2010 so far) to open my airway. In the 2nd and 3rd surgery, they have used the same ballooning technique, but also used a laser to break up the tissue, and have applied a chemotherepy drug called mitomyocin C. First they painted it on the affected area of the throat (just below the vocal cords), and in December they injected it. However my throat continues to close, and now its a choice of being able to move (on crutches) and not breath or to not move at all and manage my breathing?
This was completely not what I needed when dealing with my hip as it was. Besides the fact I cant move, this throat problem (which Why i have it is still unknown as is why it wont stay open...)affects almost every aspect, especially with relation to pain. Im not allowed to start feldenkris (a pain management therepy)until my breathing is under control, and I cant seem to do my deep breathing exercises for pain, as I run out of air!
When my airway closes, I have noticed that when I sleep, not only am I sleeping longer, but getting a very poor quality of sleep (sleeping for 8 hours, feeling like I’ve slept for 1 hour), consistently tired, I become lethargic and my voice changes into a more husky sound.
So I apologize about my lack of blogging over the last few months, sometimes there’s been nothing I’ve wanted to do but blog, but haven’t had the energy to type.
Stay tuned and I’ll try and fill in the end of last year.
Stay safe and keep breathing ;) - that's what ill be trying to do!!!
Xx
PS: As of mid Febuary my throat is open to just below 50%. I will have another check in 2 weeks times, however it will most likely need to be dilated again.
