People with a high-level SCI have very little to no lumbar support. In layman's terms, that means my back, stomach and core muscles no longer work, and that also includes muscles around my chest that would normally be involved in breathing. If my SCI had been any higher up my neck I would be on a ventilator for the rest of my life. As it was, there was just enough nerve signals getting to my diaphragm and some chest muscles to allow autonomous breathing. It took awhile to bring me off the ventilator, a few months, and a little while longer after that for my tracheostomy to be removed.
I mention all of this as background information to paint the scene really as to why my catching any sort of chest infection could actually kill me. Maybe I'm being melodramatic here, but actually, my breathing is such that I have no cough reflex. So if you can imagine having a full chest of phlegm… You're at your sickest, as your coughing and hacking and bringing up all kinds of goo. I can't do that. I literally cannot bring up any goo whatsoever on my own. Being unable to breathe is so very scary; you can hear the rattles and bubbles and crackles inside your lungs but you simply cannot draw in any air, or let it out again. So you dial 999, and hope the paramedics will arrive quickly.
A year and a half ago I was admitted to hospital in Liverpool due to the above problem described, and whilst a friend was visiting me I grew short of breath during our conversation. The next thing I knew I was gasping for air, then I could not breathe at all, and then I passed out. I woke up in ITU - having had a respiratory arrest. My lungs simply could not work any longer with all the crap inside them. Needless to say, this caused great concern and panic for me because, well, it came out of nowhere… One minute I was chatting away and the next I had a plug of phlegm that caused me to stop breathing completely.
Just over two weeks ago I was admitted back in the hospital because I could not breathe properly. It came on within an hour… First I was feeling fine and then I started to feel funny, and I couldn't really cough but I needed to. My PA tried to assist me in coughing, but nothing was shifting. 12 hours later I still wasn't able to shift anything off my lungs and I was gasping and rattling and wheezing. My temperature was soaring, my oxygen levels were down, and the paramedics whisked me off to A&E.
1. When a girl can't breathe she's going to panic. Do not ask questions about whether or not to pack her shampoo and toothpaste!
2. Physiotherapists should be ready and waiting at the hospital, due to the paramedics radioing ahead. They should not be called in three hours later after arrival in A&E.
3. Taking four samples of blood from a panicking tetraplegic will only serve to make her panic more. One set is expected, the second is reasonable, should the first set be inconclusive. The third and fourth will only cause more panic and raise suspicion… Wanting to know what is so important about my blood that is causing concern for so many samples to be needed.
4. Recognising that the tetraplegic who cannot feed herself or use her hands is probably very reliant on her PA/carer for pretty much everything, so NHS staff should realise that the PA has quality information and superior knowledge of the patient than they do. Listen to her.
5. Primary Care Trusts should understand that hospitals CANNOT fully provide for the care needs of a tetraplegic with such limited movement, and therefore the PA/carer should not be removed at all. Continual care is necessary to provide continuity, and reduce the stress of the patient. Whilst I'm suffering with pneumonia I do not want to have to explain and repeat to every single new shift of staff how to feed me, wash me, dress me, turn me, and aid me in personal care.
6. Most importantly - I'm dealing with PNEUMONIA, I do not want to have to tell every new person who comes into contact with me how I ended up as a tetraplegic. The sickness is hard enough without having the stress of My Story having to be told a million times.
7. The most effective way to clear lungs in a person with no cough reflex is to assist them in their coughing - basically giving them a form of the Heimlich manoeuvre. A slight shove will not suffice. Especially when the phlegm is like wallpaper paste. You've really got to basically punch me in the stomach! Physiotherapists know how to do this. Teaching nurses is great but then nurses teaching nurses is not so great. Especially when it's then nurses teaching nurses (becoming third and fourth hand). It's like a form of physical Chinese whispers, and in the end, when I need my chest clearing the physio needs to be called anyway! It's really annoying that I always need them when they are not actually at work… Early in the morning, and last thing at night.
Okay then, that's enough moaning from me for now I think. Needless to say, I was very glad to get home!
The first million times its okay after that it does become a drag, however your circumstances were not of you're making. I imagine it is hard seeing you look on someone's face the millionth time you tell them that you dived in to the shallow end of the swimming pool.
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