Wednesday, October 18, 2006

For someone who is supposedly fairly bright, well educated, and has an adequate amount of life experience, I can be rather dim. I was having one of my puffy moments – when breathing itself seems like the most tiring and strenuous activity, and every breath in takes concentration to lift my ribcage (you know that feeling when your leg muscles are burning because you have been walking too far or standing for too long or something, that but in your chest muscles). I recently had a new Claire (O2 machine) installed and she is (supposedly) superdooper powerful and goes up to 8litres, allowing me to have more oxygen when I need it. At the same time, the nice man fitted a little bottle which is filled with water and then humidifies the oxygen, as well as providing a nice little bubbling noise which I like to imagine is a zen-type water feature like celebrities might install in their house or similar.

I figured this was quite a good opportunity to road test new higher flow O2 and decided to switch to my higher concentration mask and turn the flow rate up. As I went to do so I noticed that the humidifier was on empty, so idly wandered over to the kettle which had some relatively cool water in, took it over to the oxygen machine, and unscrewed the bottle. What I hadn’t quite accounted for was the minute I did that my oxygen flow stopped. And I wasn’t feeling particularly fabulous in the first place. I have the somewhat amusing logic that when I am doing something which makes me breathless or that I have to take my oxygen off for, for some reason best known to myself (actually I am not even sure why) I rush through said thing even faster, in order to make it “be over” quicker I suppose, when of course pacing myself would be a much more sensible option. so sure enough, I felt the oxygen flow stop, and true to form started rushing to pick up the kettle and fill the bottle, making my heart thump harder, and I could feel my oxygen saturations dropping (fairly unsurprising as I had just upped my physical exertion whilst receiving no supplementary oxygen at all). I managed to get myself in a bit of a state and after leaning against the wall gasping like a fish and trying to calm down, had the prudence to connect up my portable oxygen to relieve my poor little lungs which were by now on absolute overdrive.

Needless to say, both heart and lungs are absolutely furious with me for my silly antics and have been having a strop ever since. Sadly it turns out the superdooper powerful Claire apparently doesn’t like being turned up to her maximum 8 litre capacity and starts alarming crossly at me, so I have had to resort to my lower % mask and have called out an engineer who will be with me some time this evening. Not quite sure what the point of an 8 litre machine is if she won’t run at 8 litres but hopefully it is a minor problem and easily rectifiable.

Mummy has been here all afternoon, lying next to me whilst I puff away, chatting incessantly in my ear and saying medically inept things like “would something to eat help?” In other words (though don’t tell her as she is impossible when praised) being a mummy in a million and just being “there”. She has also been keeping me amused with tales from the classroom. My mother is a teacher of very small people (roughly aged 6 I think) which is the perfect job for her as she is on the same wavelength as them so they get along rather well. My favourite tales of late have been about her “mad as a badger” child in her class, let’s call him H. My mum has a tendency to exaggerate so when she first proclaimed that this child was a tad unstable none of us really batted an eyelid, however when she offered the evidence that “he has eaten four pritt sticks (non toxic glue, but am still fairly sure it shouldn't be consumed) since starting in September” it seemed that perhaps this label is more justified than previously assumed. It turns out that H likes to chew things. Anything really. What amuses me more is my mothers concerns and disciplinary measures seem to follow along the lines of moving him away from the book corner on discovering that he was working his way through the classroom’s reading resources. Amusement factor increased when she described how having taken them swimming, H was marched out to the changing rooms by the instructor holding a float with bite sized chunks missing round the edge, only to be sternly reprimanded “too much float H!!”. Clearly the amount consumed is the problem here...


Anonymous said...

I love how you name your equipment. You sure to keep yourself (and others) amused. I need to ask Kina if she does that sort of thing (Carly the Cartridge Respirator, Connie Cannula, Bonnie Bandage).

I was on some site of hers, btw, and apparently the procedure went well and ended at 2:15ish in the a.m. Wish I could recall where I saw it, but old news to you, I'm sure, but maybe not.

Rest those organs, kid. Watch some good stuff on TV.

Anonymous said...

Oh dear, but thank goodness for lovely mummies :) I hope Claire can be fixed soonly! Take care of yourself and keep smiling xxx

Emmie said...

Awww sorry to hear you are having a tough day poppet. Glad to hear Mummy was on standby to administer her unique style of medical assistance...i.e. making you laugh so much you could probably breathe even less hehe ;o)
Sending you a very big (but oh so gentle) hug.
MWAH xxxxxxxxxxxxx

Anonymous said...

Sending you (((hugz))) & positive vibes as ever.. ;)

Hi to your family too, especially your mum awww. ;)

Elaine & Rach :D xx

Anonymous said...

Apparently Kina's transplant went well and she's off the ventilator, after only seven hours! Thought you'd like to know!
I hope you're doing ok this evening :) Much love xxx

Anonymous said...

H and Sholto have a lot in common!

Hope tomorrow proves to be a muchly better day for you.

Best always,

~ James xx

Anonymous said...

Emily, your poor darling, that can't have been pleasant but you still keep your sense of humour. Good for you - hopefully Claire will soon be sorted out to your satisfaction - and that of your poor long-suffering lungs. My thoughts as always with you, Mum and all your loved ones at this difficult time; you'll see, better times just around the corner...
all love, Janet

Jayne said...

Is this child quite hairy? Is your Mum sure that it is a child, and not actually a dog that has wandered into her classroom?

On a more serious note, sorry to hear that you are feeling rough.

Take care

Anonymous said...

Just popped in...checking up on you to be honest ;-)..your mum sounds like a truly lovely lady/teacher,love the story of "mad as a badger" sounds alot like Aaron... we call him Tazmanian devil(the joy of steroids!)
Thinking of you...
Cat x

Anonymous said...

Sorry you're having a tough time. Glad Anne has been able to provide entertainment, she is a fab mum(i have known her for about 28yrs and her energy is infectious! She must be a tower of strength to you!) Hoping you get your call real soon,you really deserve it! Keep smiling, love to you and mum too ,love Diane Tullett xxx

Unknown said...

Hi Emily,
Sorry to hear you are not feeling to good. I know what it is like to have puffy days even though I don't have CF I know from having asthma. I had my flu jab today which was ok.

Why don't you make a wish list with all things you want to do when you have had your transplant (I bet the list will be long)
You are welcome to contact me if you wish.

I hope you transplant comes your way soon.
Take Care sending you smiley and pink and sparkly thoughts.


Anonymous said...

Good to here your at home and have your witt still. Every time I log on the net I try to find out what you are doing? was a little worried when you went all quiet, then to realise your lungs were not looking after you. I am a mum with a CF baby and have spoken to you by email before. You certainly do as your moto "This is my life and I choose to love it". Well done any keep keeping us entertained.

Anonymous said...

"too much float H" brilliant. had me laughing for...far too long.

sorry to hear you're bringing nastiness on yourself, hope you're feeling better soon chick xxx

misdee said...

just checking up on you.

H sounds like a character. L does things like this often you hear cries of 'noooooo L, stop eating the fence.' ;)

Take things easy, dont overdo things,keep strong for that call.

Anonymous said...

My own Mummy has many stories to tell of similar children with biting/chewing habits, lets hope they grow out if it by adulthood...not many employers/potential partners/indeed, friends can be comfortable with the fear of losing fingers! Hehe that tickled me PINK (the special word) muchly-thinking of you lovely. Take it easy ok?xxx