I’m out of the hospital now. Life is much better.
When I first went home, I was still using oxygen 24/7, but the long tubing on my oxygen concentrator allowed me to actually walk around the house at will.
At St Vincent’s I’d been literally tethered to the bed by several meters of tubing on a canula coming out of the wall. I also had portable oxygen on a heavy, stiff-wheeled, trolley; but these seemed to run out very quickly, and busy nursing staff were not always available to scrounge up new ones for me. So being at home and suddenly being able to walk up and down the corridor, in and out of my bedroom, into the bathroom, kitchen, and even go sit on our sunny little front porch, seemed an awful lot like freedom.
But then, of-course, I got used to it, and started to take it for granted. And then I began to perceive it the way I had before I went into hospital – that is, as a very long, annoying piece of tubing that becomes tangled up all the time, is always in the way of other people, and always, always becomes stuck underneath a particular corner of the fridge whenever I go in and out of the kitchen.
Not freedom after all.
However, there is another, far more unpleasant aspect of being on oxygen all the time: coughing up blood.
When you have a high level of oxygen flowing into your nose all the time, the blood vessels can burst, and then blood either comes out your nose, or, as happens in my case, runs down the back of your throat and accumulates in a weird kind of rattly cough.
Picture this; it’s night-time and the hospital ward is dark and almost quiet. You’re lying in bed, trying to ignore the beeping of the alarm on your bed-neighbor’s IV pump, so that you can drift off to sleep. Suddenly, you feel this strange rattly sensation in your throat. You open your eyes. “Ahem. Ahem.” Clearing your throat doesn’t seem to help, because there’s immediately more of it. And then more. You sit up. If you don’t sit up, you feel like you might drown.
You fumble for the tissues, for a napkin left over from dinner, for anything. Cough, cough, cough, and you spit it out. It tastes weird. It’s hard to see in the dark, but there’s a dark, shadowy shape in the tissue, a weird blackness to whatever you coughed up. You switch on your mobile phone and use it as a light source (the hospital’s bedside light doesn’t work) and you see that it’s not black after all, but…
Blood! Auuugh! What the hell?
And then you feel the rattle in your throat again, and you have to quickly grab more tissues because there’s a heap more still to come up.
This is not like Nicole Kidman’s character in Baz Lhurman’s Moulin Rouge who tragically coughs up a tiny spot of blood and then dies of TB in the middle of a song about how wonderful love is. Or poor insipid Beth from Little Women, who in between lady-like and restrained coughing fits into a snow-white, beautifully embroidered, handkerchief, tells Marmee and the girls how glad she will be to get to heaven and be with the angels.
This is more like Stephen King’s Carrie. Or HBO’s True Blood. Unfortunately, telekenisis and vampire superpowers are not part of the deal.
One of the handy things about being in hospital, however, is that you can push a buzzer next to your bed and (eventually) a nurse will come, and then you can hysterically demand to see a doctor, NOW, even if it’s in the middle of the night.
So after a bit more waiting, a lot more coughing, and a lot more blood, and using up a whole box of tissues which probably constituted an entire old-growth rainforest, a doctor showed up and told me the thing about blood vessels in your nose and being on oxygen all the time. And the vasodilator drugs I’m taking don’t help. Nor does the fact that I have low platelets, which mean my blood is slow to clot.
Well goody for me.
Since I’ve been home, it’s happened a few more times, meaning that both my parents are now irrevocably traumatised. If it keeps happening, they’ll probably develop post-traumatic stress syndrome and start having gory flashbacks.
“The horror! The horror!”
That is a quote from Joseph Conrad’s Heart of Darkness, by the way, which is perhaps a rather hyperbolic point to make about this situation. Sorry about that.
In any case, since I’ve been out of hospital, I’ve been able to stop being on supplemental oxygen all the time and go back to only using it at night. I haven’t had any incidents for an entire four days, which is wonderful.
So I’m hopeful that I’m getting better; that things are improving. The doctors have given me three months to put on some weight and do some physiotherapy and then they will put me onto the transplant list. I’m still hoping that now that I’m back on the wonderdrug my condition will improve and I won’t need to go on the list.
The list is a scary place to be.
But I’ll write more about that another time.