Thursday, 29 October 2009

Rough night and feeling the slog

Will asked me to report back that his morphine experience was less than satisfactory. It made him have weird and scary psychodelic thoughts and all the sounds on the ward were turning into threatening music in his mind. (I like to think this says something about his inner musical genius.) It was a tough night with emergencies elsewhere on the ward, so there was lots of disprution and stress and Will didn't really get any sleep.

Will has now been moved to a side room, which commands an enviable view of the hospital duck pond (nicer than it sounds) and autumnal trees. It'll be great once he starts feeling well enough to appreciate it. We heard today that he has pseudomonas in his new lungs. He had this bug in his old ones and it's likely that it got transferred from his sinuses. Apparently 75-80% of CFers retain it after transplant, and they just try to hit it fairly hard and it's not usually a particular problem. So the IV antibiotics are continuing and he's nebulising colomycin, which he knows of old. He had another bronchoscopy today and Jaz, the consultant chap, was happy with what he was seeing, saying that the lungs were looking pretty healthy really. At the moment the hardest thing for us both is the psychological battle - it's hard to keep the faith that things will get better and easier. It's so tempting to expect too much too soon, but it really is very early days and everyone always told us it would be hard. There was mention of getting Will to the gym tomorrow, and I think activities like that will really help.

So, a rollercoaster of a day, but I left Will a few hours ago looking reasonably relaxed and settled (and he had perked up to the extent that he made me take photos of his wound!), so I'm hoping it'll be a better night for him. At least he'll be calmer in his new executive suite. Keep up the thoughts and prayers folks.


  1. Really sorry we haven't been in touch directly but we have been monitoring progress via various Sturdy / Cramer routes. Good to hear things are going well so far. We have everything crossed for a speedy (whilst being effective) and un-complicated recovery.

    Lots of love, Chris & JaneE.

    P.S. Chris might uncross his legs on Sunday morning to do his run (he has raised more than £750 so far for CF)

  2. Hello Vicky,

    So sorry Wim had such a horrible night. Hope he has a better one tonight. What you're both going through is unimaginable for the rest of us I should think and you have both shown such courage, generosity of spirit and humour in the face of a horrifying experience.

    I think you have really helped everyone else by your approach and I am so grateful to you for the blog. As William's Auntie, living hundreds of miles away, it has meant the world to me. I only wish there was some way I could reciprocate. Most of the time I just don't know what to say, but thoughts and prayers will never stop while you are going through this.

    'Rollercoaster' would seem to be the keyword and, as you say, it's going to be that way for a long time. But the people that you are can make it, I'm absolutely sure of that.

    I'm coming down to Julie's on 12th November - that's two weeks and hopefully you will be seeing major improvements by then. Sorry this is turning into a rather lengthy comment. I was going to write a letter but there's a postal strike!

    If there's any justice, my adorable nephew and his wonderful wife will have a better day tomorrow. XX

  3. hey vicky and will,

    we hope will has had a better day today and that he has managed to get along to the gym! and has had less experiences with hard core drugs!...I'm sure you're right about his inner musical genius!

    you are both being so amazing and strong and we are totally in awe of both of you...we are checking the blog every day and are so pleased to see that will is improving all the time!

    we hear that hospital food can be a bit bland so steven was wondering whether there is a favourite dish (main course and pudding of course) that we could prepare and drop off for you?

    speaking of food...we thought of you as we watched the first episode of the restaurant last night and thought the two of you would be tucked up in your new private room enjoying it as much as us..dare I say it is even better than masterchef!...partic that silly girl trying to open a tin of evapourated milk with a large sharp knife!!!!!

    lots and lots of love

    the wilsonsxxxxx

  4. Thinking of you as ever. Hope you get a more comfortable night soon. The 'wounds' sound interesting. Did they opt for the clamshell or the vertical? The thing I don't get about the clamshell is if they have to saw through all your ribs, don't you end us as just a floppy mess? It makes my head spin just thinking about, and I can't begin to imagine what it's like going through it. I've just checked out lung transplant on the ever informative Wikipedia and was quite suprised at how limited the scaring is. You'll need to grow a pair of man-breasts, like I seem to be doing of late, in order to cover it up.

  5. Hi Wim and Vicky, I've just caught up with everything having exchanged texts with El a few times and am so delighted that Wim is up and about - it just seems mind blowingly miraculous to me.

    It's so tough on you that the incredible challenge of getting through the op itself opens up such an instantly demanding post-op phase. No resting on your laurels (physical or psychological). I am bowled over by your emotional strength and resilience, both of you.

    It's so helpful to be able to envisage Wim clearly through the blogs, beard and all, and I'm thinking about you both lots.

    All love