My campaign partner in crime Emma and her husband have just returned from the Caribbean, where they have been hiding out for the past month before graciously agreeing to come home. I thought it would be nice to see them for a quiet lunch and “business meeting” (in inverted commas due to the complete falsity of that claim). My lungs however spectacularly disagreed with me that this was exciting enough, so on their arrival decided to start up their attention seeking antics. I carried out all the usual methods of count er-attack; (it is like having a five-year old that exhibits regular tantrums, you learn certain tricks which hopefully trick the little blighter into submission) I nebulised the appropriate medications, put on my high-flow mask, tried extra physio, lay down, even stopped talking, but my lungs were having none of it. The problem is once these puffy episodes take hold they can become a bit of a vicious cycle, with my lungs screaming for a rest, and of course the one thing you can’t do is stop breathing to give them a break, therefore the muscles ache more and more and each breath just becomes increasingly harder work. Usually the high-flow mask does the trick, but this time not even this trump card was having the desired affect. Due to having quite a large amount of chest pain over the last few days - fairly normal for me but nearly all of this has been concentrated on my right side, which was the persistently deflatey lung this summer – I was coerced into being sensible, rang my hospital and as predicted was instructed to head to my local hospital to rule out a pneumothorax.
As I began ordering people around to gather together my stuff, I realized that my funky new liquid O2, as great as it is, only goes up to 6litres. The mask I was currently using runs on a minimum of 8litres, resulting in the horrible recognition that I had no choice but to call an ambulance. After offering various suggestions such as “I could go and lie down again and see if it feels better” which were met with a no nonsense retort of “if you don’t phone them I will” I sulkily picked up the phone and dialed 999, feeling like the biggest fraud in the history of the world. I kept apologizing repeatedly to the poor operator as I know how stretched ambulance resources are, and having needed one in a dire emergency before I hate to take up their time when in fact it isn’t life or death. I know all the spiel off by heart, explained I am end-stage cystic fibrosis, awaiting transplant, recurrent pneumothoraces two of which have tensioned and what my present difficulties were. It doesn’t matter how much you already know the spiel, it doesn’t make it any easier to say. Nor did knowing that this wasn’t a huge dramatic emergency make asking for an ambulance any less frightening.
A first response unit car turned up very quickly to assess the situation, followed minutes later by an ambulance. My house is not very large, and has a rather slim hallway which is not really designed for 5 paramedics to be wedged in, attempting to filter into the lounge. After assessing the situation and taking a few readings everyone was satisfied that I was OK to be moved and set about getting me into the ambulance. I offered to walk which strangely they didn’t think was a great plan, so insisted on wheeling a little stretcher-chair into the house (amusingly having to first stop and move the huge obstruction that is a mountain of my shoes from the hallway into the bedroom) then placing me on my throne with wrapped in a blanket with various wires attached (but sadly no tiara as requested).
I think I am going to have a typed out essay with my life history on it, or learn sign language or something, because the worst bit about a new admission like this is having to give all your details and history when the reason you called them in the first place is because breathing has become a monumental challenge. Emma dutifully tried to answer as many as possible for me, but the list was endless, with some of the good old favourites such as “how long have you had CF” (which make me want to staple things to the person's head) making an appearance. The superlarge quantities of oxygen they were giving me were clearly working, because as the aching and fatigue lessened, my pouty-face and evident annoyance at daft questions escalated, to the extent that I had to avoid eye-contact with Emma and stare very hard out of the window (made somewhat less realistic by the fact the blinds were down) biting my lip to stop from laughing.
My lungs are pretty complex, and CF care is very specialized, so every time I turn up at a general hospital I know it is going to take rather a lot of explaining and scowling to get the correct treatment. I tried explaining that I just need 2 X-rays to rule out any collapse, as I already know my lungs are grumbly which is why I am awaiting a bed at the Brompton, so as long as it is not immediately life-threatening I can go home and wait there. After scaring the radiographers into submission (I still don’t understand how the argument “we don’t do laterals” – a rare sideways X-ray which I need to show up the weird areas of collapse I get – is used so freely as a retort when clearly I wouldn’t be asking for one for fun, unless I had an uncontrollable desire to glow green or something) and subsequent X-rays revealing no new problems, I immediately switched tack to “let me out let me out let me out let me out”. The trouble is my lungs seem to make general docs break out into a sweat and it is hard to explain that actually my level of “normal” greatly differs from the majority of people who arrive in A&E, therefore they needn’t feel bad at letting me go with the problem unsolved because there is no quick fix. Whilst we waited for discharge we killed time by pondering riddles such as “why in a hospital do they not have any portable O2, meaning I have to walk to the bathroom with no oxygen at all?” and other mysteries.
Having talked the doctor (who was actually a very nice guy, very thorough and did listen) into letting me go home, we suddenly realized that having arrived via ambulance I had no portable O2 with me. My lungs were a bit happier having had some mega high O2 support, so I felt I could tolerate nasal specs on the way home, so promptly sent the men home to locate and retrieve appropriate oxygen supplies. Brad returned triumphant with Nellie (liquid O2 cylinder) who true to her name was honking and trumpeting loudly, I suspect she was indignant at being moved about at this time at night. We wheeled me speedily to the car, where their poor well behaved dog was so delighted to see our re-emergence she promptly jumped up on the dashboard setting off the car alarm in her excitement. As Brad grappled desperately for his car keys to silence the screaming car whilst simultaneously trying to stop me wheeling off unaccompanied down the slope, it dawned upon me that instead of sensible shoes, I was sporting large cerise and pink striped bed socks, and whilst they made me smiley due to the bagpuss-esque appearance of my feet, they were possibly not the most practical footwear for wet and rainy weather. We pondered this a while, before Brad came up with the ingenious solution of me standing on his feet and walking to the car in manner of 5 year old child or similar, Nellie honking gleefully in a musical accompaniment as we waddled towards the car. On reflection our departure was not the slick and sophisticated one I envisaged.
Whilst there was joyfully no signs of collapse (yay) lungs are still being incredibly grouchy – I haven’t moved from my bed yet this morning and my muscles are already behaving as if I have been for a brisk 5 mile run before breakfast. Breathing is just so very very tiring. So I am heading into hospital for a spell, feeling very upbeat about it as to be honest when it gets this hard I would much rather be in there resting nicely (or pretending to) plus I am viewing this as a pre-Christmas MOT so nothing to be too concerned about.
Have got a bed (woohoo) so I am just waiting for my lungs to settle a bit and behave enough to make the journey up there. Hoping to find some net connection to preserve sanity but if there is an unexplained absence of postingness that is why!
2 weeks ago