Wednesday, 2 December 2009

Bronch and results

I didn't quite realise, when going to clinic on Tuesday morning, that when they do a bronch they keep you in hospital overnight and the next day until the results of the biopsy come in the late afternoon. Lucky I went with a bag packed and all my drugs, as we are instructed to for all clinic appointments - just in case.

So we did the clinic thing - see a nurse (while Vicky was busily buying a new month's parking permit for the car - 1st December of course!), queue up for blood tests, wait for ages for the chest X-Ray, see Jas. By the time all that was done, and due to the fact I felt grim when I woke up that morning and so was rather slow in getting going, it was about 12:30. During the appointment with Jas it turned out there was some confusion about whether I was supposed to be bronched this week or next week, but they managed to find me a bed on the ward and set up the bronch for the afternoon. The bed wouldn't be ready until 2pm, so we went to the canteen and I watched Vicky eat a sandwich and some ambrosia creamed rice from a small pot - I couldn't have anything because I was nil-by-mouth since breakfast to prepare for the bronch...presumably to avoid you being sick when they shove a camera down your throat!

Vicky helped me carry bags to the ward and then went off to work. As I sat outside the ward in the corridor waiting for them to make the bed a bloke turned up saying he had come to take me to my procedure. I explained I hadn't even got a bed yet, and hadn't been admitted, no wrist bands (that give your name, DOB etc), and so he went into the ward to find out what was going on. Cue mad rush to get me in a surgical gown and put wristbands on and get downstairs to the FOB room. It turns out later that Jas had got me a bed by, basically, lying and saying I was unwell and needed to be admitted as an emergency! Apparently they'd changed round the whole ward and moved loads of people to fit me in. No wonder, then, that none of them knew I had a bronch planned. There was quite a lot of eye rolling from various nurses ("Dr. Parmer! Tch!") later on.

The bronch room is very chilly and surprisingly full of people. I think there were about 8 people in there - various nurses, technicians and two docs - Jas and "Little Mo". I am learning their nicknames now - there is "Big Mo", otherwise known as "Mighty Mo", who is a small (ah the irony!) doctor called Mohammed. "Little Mo" is taller - not sure what his actual name is. Anyway, I digress... The bronch room is about living room sized and has a bed, a big X-ray machine and a bank of LCD monitors. I think it doubles up as an X-ray suite or CT scanner or something. I lay on the bed and was attached to a monitor to look at my blood pressure, pulse and oxygenation, and they put a little bit of oxygen up my nose to keep things hunky-dory. One of the nurses sprayed my throat 3 times with an anaesthetic spray which tastes of very bitter bananas and makes you feel like you've swallowed a golf ball. They then put a Hannibal Lector style mouth thing in which you bite and keeps your mouth open, secured with an elastic strap around the back of your head. Nice. Jas put a venflon (a short IV line) into the back of my right hand (ouch!) and then Little Mo administered a dose of metocloprimide (anti-sickness) and then the midazolam sedation.

Now, I'm not sure if I'm getting used to the sedation, but for each of the four bronchs I have had since the op I have been marginally more awake. I don't think I was awake for the whole thing but at some point I was very awake and could look up at the screens and see the inside of my lungs and hear them getting confused about how many biopsies they had taken (it seemed they had lost count around 8). Little Mo was in control of the Fibre Optic, which I could see going into my mouth and was black, around the diameter of a pen, and had white markings on it, which I wonder if were to indicate what length of the FO is inside...? Little Mo was saying "open....close" each time they did a biopsy and the screen would go red with blood as they chopped a bit of my lung off. It was rather uncomfortable as they shoved the cable in and out, and I was thinking "How do I tell them I'm awake" since you can't speak. I thought about waving, but didn't. It was all over fairly quickly and I got wheeled on a stretcher back up to the ward, slid across onto my bed and slept for about an hour.

I got up for some supper, was absolutely starving, and wolfed it down. Vicky turned up and that was the end of a busy Tuesday. After a rubbish night's sleep my Wednesday consisted of an ECG to check my heart out (as I'd been complaining of the fast heart rate) and another X-Ray to check they hadn't damaged anything during the bronch. I'll be glowing soon, the number of X-Rays I've had...

About 4pm Weds, Little Mo came into the ward and said the bronch was fine and I could go home. He qualified 'fine' with the fact that the result came back as 'Very Low Level Rejection' which is the lowest measurable and classifiable level (they use a 5 or 6 level descriptive scale it seems). He said they don't treat it at that level. He then spoke to Jas on the phone, came back over and said 'OK, most people don't treat it, but Jas wants to increase your steroid dose to 30mg a day for 10 days and then do another bronch, just in case it is the start of something worse'. 30mg is a doubling of my current dose, and I fear may send me slightly loopy. When I was on the higher steroid doses in hospital, as you may remember, I had quite severe mood swings so am slightly nervous about that. I've taken the first dose about half an hour ago and am ok so far. I guess I have to think that it is a lot better to be a bit weird in the head for a week or two than to reject my nice new lungs. Lesser of two evils and all that...

So, Vicky and I plod on through this weird, unstructured, uncertain, worrisome life, wondering when some stability will come. I guess it will be a while yet.


  1. Hiya.

    Well done both of you getting through another hospital visit! What an extended trial it is for you. Hope you see the light at the end of the tunnel soon.

    All our love,

    Jane and Scott xx

  2. They do say everything comes to he who waits and what you've written sounds positive to an untutored brain like mine. Sounds like you're a bit of a superstar, people falling over themselves to accommodate you, do you have to wear shades when you go in to maintain the illusion ?

    Hope the progress continues. Reading this at a distance it's very clear you've had a big improvement, the tale of of your walk etc especially given the current weather is hardly conducive to efficient functioning of the body. It's still only just over a month so imagine what two months can bring and three ... !

    Have fun (both)

  3. Have to agree with the above post - think how well you will be in another month.
    I wouldn't worry too much about the endless x-rays: a flight to the US irradiates you as much as one chest x-ray. Obviously the latter is more focussed rather than full body exposure but it puts it in context.
    Can't believe you've seen inside your new lungs! Wow! But maybe you should mention it next time so they can increase the sedation...

    As an aside, Clare and I don't send xmas cards to people we sit with in the office (seems a bit pointless!) but instead choose a charity and contribute to that instead; many of our colleagues opt in. This year we have of course chosen the CF Trust. They do a great pack with a collecting tin, and posters to explain the xmas card substitution and several on which people can write their greetings. If anyone else wants to give this a go see the address below, I don't think it will post as a hyperlink so you might have to paste it in.
    Merry Yule - only three weeks to go!

  4. Not that I need to say this, but keep up posted! And hang in there, Will. It'll right itself with a bit of time.

  5. Great to hear about your walk, it's so amazing to hear how much improvement you are experiencing from the new lungs despite all the stresses and side effects. Hope you can focus on that to help you get through the horrid bits...and good luck with the steroids.

    LOL KT

  6. Have to agree with all the above posts. The walking sounds like a huge step forward to me... but don't just think about the lungs, keep the walking going and get the rest of you fit so you can come and visit and take advantage of the skiing.. already snow up on the tops 15 mins away from us so looking good for Christmas .. a bit soon now but get ready for next year?

  7. Hi will - saw your email to the voce group a little while back and just stopped by to congrats on progress so far and all good luck and love until you are out of the woods... Kate x

  8. Hi,
    I just found your blog and your experience is very interesting. I was surprised to read that they hospitalize you after bronchoscopy. . .I have done them as outpatient, usually leave the hospital once I wake up enough to eat and drink a little. You can check out my CF Transplant blog if you would like
    I am 2 years post double lung transplant and am doing incredibly well. Good Luck and hope your recovery continues to go well.