Will was more cheerful today and has been enjoying hourly perambulations of the ward as part of his fitness regime. Being Will, although the instructions were to do this between 9 and 5, he started at 7.30 and did his last lap when seeing me off at 6.45. He also did 5 mins on an exercise bike at very low resistance. His mum and dad came up to see him and were, I think, pleased at how much better he seemed than when they last saw him. Overall the boredom is really starting to get to him, but he's frustrated at how quickly he tires, how rubbish his voice still is, and how difficult he finds it to read. We think the latter is related to the painkillers he's taking - something called tramadol for you medics out there - along with some dizziness and tremors. We think the op may have damaged his vocal cords a bit - we were warned this was a possibility. They may well sort themselves out over time but, if not, a minor op in the future may help to free things up. I think he really needs to properly rest his voice, but that's tricky when you are in hospital and people keep asking you how you are. He is desperate to post messages on the blog, but doesn't really have the technology or stamina. He's starting to note down memories of the last week to make sure that he doesn't forget things before he shares them with you all.
One thing I wanted to share with you was a little about Will's last day with his old lungs. His last day at work involved a day-long hair straightener brainstorming session. As far as I can work out, this involved a room full of men wearing fake long curly hair and practising the straightening action. Will managed to strain his shoulder while doing this, such that he spent the evening wincing and complaining and demanding that I massage ibuprofen gel into him. I wasn't overly impressed by the lack of manly stoicism, and so wasn't particularly nice to him. So there's a lesson for all you husbands and wives out there! On the plus side, Will's sister and her husband had sent Will some amazing steaks as a belated birthday present, and we ate one each that evening. As he drove off to Papworth after we got the call, he remarked that he was pleased with his "last supper". I think if he'd known though, he'd have eaten it dripping with blood, as that pleasure is now a thing of the past.
What a week - am completely shattered this evening so this'll be fairly brief. On balance a better day than yesterday. Will even made it outside for his physio session. He walked through the hospital and made it three quarters of the way around the infamous duck pond before taking to the wheelchair. The physio said it was the quickest she'd ever had a lung transplant patient outdoors. I'm sure she says that to all the boys, but, as those of you who know Will well will understand, this made him happy. Achievement is important. She also mentioned a girl who had the same operation as Will who climbed Snowdon six months post-transplant. Will said he'd do it in five, though we did realise the weather would be against us. The pain continues, as does the endless quest for a comfortable position to sit or lie in, but he's lovely and pink and oxygenated-looking. I'm sure I'll post the wound photos at some point, when I'm up to tackling the technology.
Some people have been wondering whether we know anything about Will's donor. We don't at present, and I don't think their family would know anything about Will. At some point I think we'll have the option to write to the family, via the transplant coordinators, which I'm sure we'll do. It's hard to get your head around the fact that someone died, probably unexpectedly, and somewhere a family is having a completely awful time. We do talk about it, and I think Will probably thinks about it a fair bit, but it's hard to know what to feel really. I guess we feel hugely grateful that the family was able to be so generous with very little time to think about it or come to terms with their own loss, with an added feeling of responsibility that we'll try to do our very best by these lungs.
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.
They stopped Will's epidural today, and as his chest came back to life so did the pain. He's quite a bit more mobile now, so is able to move on to chairs and stand up, but is still not very comfortable wherever he puts himself. He was particularly worried about getting sleep tonight, so they have given him some liquid morphine. Will was quite excited by this foray into crack usage, but not as excited as the doctor who prescribed it, who launched into an almost Bollywood-esque rhapsody on how it makes you "fly". Hmmm. Am just hoping Will will get more sleep tonight. Sleep has been tricky for the last two nights - they keep wanting to do outrageous things like check his blood pressure, temperature and oxygen saturations.
I'm a bit grumpy this evening cos of the ward's Rules. I'm so used to CF, where they are happy for me to be there all the time and they don't enforce the mobile phone ban. On Mallard it's all about visiting hours and no mobiles and there's only one telly. It's bad of me to be grumpy as I know they are actually being more lenient with me than truly ordained by the Rules (apparently "Transplants" are treated a bit differently from your common or garden bypasses and pneumothoraxes and whatever else they get up to at Papworth).
Anyway, not much more to report, though Will managed to walk a few circuits of the ward today. And he didn't have his shave after all because he took one look in the mirror and decided he liked what he saw. So they didn't remove his vanity with his lungs. I've also bought him a little personal radio, so he can lie there and listen to classic fm (not too challenging) and try to relax.
Hi folks. Sorry I haven't posted for a few days. It's all been pretty exhausting and head-messing. Will is now settled on the ward and having more pipes and lines removed each day. He's off the oxygen now when he's at rest, and has started gentle physio. He had a bath today (a rare occurence even at the best of times) and is looking forward to a shave tomorrow. His throat is still sore from the intubation, but he is more comfortable in other respects. They are stopping the epidural tomorrow though, so there may be more actual pain again in the coming days.
Will gets tired very easily and finds it difficult to talk, so he isn't really up to visitors. Our nice friend Anice dropped off a letter for him today, which he really appreciated, and we've had some lovely cards, so if any of you have a few minutes to put a few words to old-fashioned paper and entrust them to Royal Mail, he'd love that. Send anything to our home address: 9 Blossom Street, Cambridge, CB1 2NQ. I'll take them in to him. There's also a ban on flowers and plants on the ward, just in case any of you were feeling inclined in that direction!
Thanks again for all the lovely messages - it really helps to know you're all thinking of us.
I'm writing this just to say that I'm out of critical care and onto the ward
a few false alarms with leaking drains and the need to do a bronchoscapy to Hoover up some sputum. Feel pretty uncomfortable and it's v hard to concentrate so keeping this short. Hopefuly get mobile in next few days lots of physio work.
Phew, pretty exhausted this evening. Will has been much more awake today. He even managed some jelly and ice cream for breakfast. He was in a lot of pain for much of the day but got an epidural at about 4pm which helped a lot. His throat is very sore from the ventilator so he can't talk much - and is too tired to do much talking anyway - but he's now very happy to lie there and be talked at. He did say earlier that he could already feel how different his breathing was - no chest tightness and he doesn't have to try at all when he breathes out. I've certainly never seen him breathing so slowly or effortlessly. We expect him to be in critical care another day or two and then hopefully he can move out onto the ward.
What a 48 hours! Don't know quite which way is up or where I am or what time it is, but we're doing ok. Some more sleep will be a very Good Thing. Seems so weird that this time two days ago we were just finishing Masterchef and heading off to bed as normal. Though I have to say that I felt very weird and unsettled on Thursday evening and had been "nesting" rather bizarrely. Re-arranging furniture and sorting out cupboards. When I did the washing up I left some greasy pans and thought to myself "hmmm, if we get the call tonight I'll be really annoyed to come back to these in three days' time". Somehow when the phone rang I wasn't entirely suprised.
It's absolutely fantastic that Will had been really working at the exercise for the last three weeks, and when they took bloods just before the op his infection markers were very low. So he went into all this in the best possible state he could, which should really help in the days to come.
We all finally got some sleep last night. Ellie and I ended up at a Travelodge on the A14 while our families colonised the house in Cambridge. We left Will at about half eleven. He was off the ventilator and breathing for himself. He's on loads of O2 so he doesn't have to work too hard, but his blood gases are looking good and his new lungs seem to be doing their job. He was pretty awake by the time we left and was asking about what had happened and even cracking a few jokes. He's in a lot of pain but they should be able to control that better the more awake he is. There's still a long way to go but he's doing as well as we could hope. Thank you all for your lovely messages. When I get a chance to use a computer I'll share more of the ins and outs of the last 45 hours. This this has been the weirdest and scariest thing ever - still can't believe it - but the staff at Papworth have been completely fantastic. More love to you all. Xxx
So it has happened. We got the call at midnight and Will was in theatre from about 2am. Am writing this on Will's iPhone so can't manage much. His lungs are out and they're plumbing in the second new one now. Should be out of surgery in another hour or two. They are very happy with the new lungs and how things are going, so we are feeling positive. Will's sister Ellie is here with me and various parents are on their way. Can't believe it's happened. Very considerate to wait until after the Masterchef final.
Will post again when I can and when there's more news. Keep everything crossed for us, but know that we are doing ok and are in good hands.
Sorry there have been no posts of late, but really not a lot to report. We are having a normal, fairly uneventful time. I am feeling well and have been for a few weeks now, to the extent that I have taken to riding my exercise bike on a daily basis. I bang on 5 litres/min of oxygen, wait till my sats get up to 95% and then I can happily do a reasonably hard 15 mins exercise before I dip down to 90%. I'm gradually ramping up the time and resistance and want to get to 20 mins/day in a couple of weeks. The exercise is important, and will hopefully set me in good stead for getting mobile quickly and easily after the op.
Increasingly I forget about the transplant and it is very easy, when I'm well, to feel like it would seriously ruin my day if they called. It's amazing how used to all the CF paraphenalia you can get, feel generally happy with life and your lot and forget how 'ill' you are meant to be.
On a separate note, work takes me into new and slightly bizarre territory with a project I just sold to design the next generation of hair straighteners for the leading brand of these things (who I can't mention here for confidentiality reasons). So my mind has been in a rather female space recently - considering superior straightening, shine, flick and curl capability, look, feel and ergonomics of a mass produced consumer product. Amazingly they make 70,000 a week, and sell them for £120. I won't tell you what they cost to produce, but it is shockingly little! As they say in the States - 'do the math' - it is a license to print money.
Well, just watched the second half of the C4 documentary about the ex-Eton schoolboy, now King's Cambridge student Alex Stobbs. It was quite a hard thing to watch as his life has been so similar to mine was in a lot of ways (although of course, no Eton for me).
I recognised lots of people - the music master Ralph Allwood from Eton, who I remember from a Choral course that I did there when I was 15; and then the rather staged-feeling team meeting at Papworth where I knew all the faces and most of the names.
It is clear to me that the poor chap has it a lot worse than I did when I was 19. He's using oxygen already and the docs are saying a bad infection could kill him. When I was 19 I was busy getting very drunk and enjoying all that University has to offer. I didn't conduct the Matthew Passion, but did sing it every night for a week, starting at 10pm and finishing at 1am, on tour in Gran Canaria (of all places).
I was upset at seeing him unwell, angry that the bloody thing can mess up other people's lives and ambitions as well as mine. No, that's too strong, too bitter; my life has been pretty amazing and I am obviously extraordinarily lucky in a lot of ways, but damn it I really want to go to far flung places, windsurf, climb a mountain, sing properly again, not get out of breath playing the piano... So, yes, I cried seeing Alex coughing away in hospital - it holds up a mirror to your own problems and intensifies them, and I feel so very sorry for him not even getting it as good as me.
My philosophy, again, is exactly the same as his - do your best to be normal. I just hope that he reaches, as nice doctor Helen Barker put it, 'another plateau' and is given the opportunity for a transplant. Maybe I'll get in touch with him in a month or two once the publicity has died down.
I am a 35 year old CFer married to Vicky and living in Cambridge, UK. I had a double lung transplant in October 2009. This blog follows our ups and downs through the pre- and post-transplant experience, as patient and partner.