The dreaded Christmas shopping

Well, it was a sort of success. Today started well - I got up pretty early and after breakfast walked over to the surgery to get (yet another) prescription and then dropped it into the pharmacy. Couldn't have done that walk before the transplant. After getting home I did my 10 mins warm-up exercises and then 20 mins on the exercise bike and got up a good sweat. Certainly couldn't have done that before the transplant. Had a shower and dried myself. Couldn't even have done that before the transplant without some oxygen to help me along. What I'm trying to say is that I have to remember how bad it was before, how good it is now and how lucky I am.

Of course we then really needed to get into town to do some Christmas shopping, leaving it until the last minute as usual and perhaps having a reasonable excuse this year for not getting it done yet. We walked in (couldn't have done that before....you get the idea), bought a couple of things, had lunch with a friend in Carluccio's and that was basically enough for me. I started to feel achy and a bit broken physically, so left Vicky to it and walked home. Still, probably the most activity in a 5-hour period yet, so pretty happy about it. The shopping will have to get done...er...well, what's Christmas Eve for anyway??

Hope everyone is revving up for a super Christmas. I just want to say thank you again to everyone for the amazing levels of support through all sorts of means over the last couple of months. It has been humbling and marvellous - we couldn't have done it without you.

8 weeks and an all clear

This time 8 weeks ago I was one hour out of theatre, asleep on the Intensive Care Ward. This anniversary feels a bit significant as it opens up a couple of things for me: firstly, driving, which the doc said at clinic on Weds should be ok; and secondly, riding a bike. With as much snow on the ground as we currently have, needless to say I won't be attempting my maiden bike ride today. I think I'll wait until after the cold snap...

The other piece of news to relate is that I had a call from Val, one of the nurses at Papworth, to say that the biopsies taken during the bronch on Wednesday were all clear - no rejection. Hooray! Them steroids they working! They want me back at clinic in between Christmas and New Year, on the 30th, which is a minor pain as we may be in Norfolk or Oxfordshire, but I guess otherwise the gap would be too long between checks for this stage of my recovery.

They hadn't yet got the microbiology results back, which is where they analyse the lung secretions to see if there is any bacterial infection. However, Jas said after the bronch that it was all looking very clean and clear so it is pretty unlikely there is anything untoward going on.

All good news then. A beautiful snowy day (especially if you aren't trying to drive to work!) and a great excuse to start feeling really Christmassy. Ho Ho Ho!

Bonus super-speed bronch

The CMU wards may have been rife with the Norovirus winter vomiting bug but they also have a Day Ward, just down the corridor from the bronch room, which is used to give beds for people having simple procedures. In my case, because I live only 30 minutes down the road from Papworth, they had decided to let me have the bronch from the Day Ward, go back there and rest for 2 hours and then go home. So home I am!

I am relieved to be able to tell you there were no complications - I have neither bleeding nor a punctured lung. On my request they gave me slightly more sedation so I wasn't so awake and aware as last time, which made the whole thing less traumatic and it seemed to fly by. I lay on my side for an hour, then sat up and drank some water, then a cup of coffee and finally was brought a sandwich and a bit of cake. They sent me to X-ray for the post-bronch shot and shortly after that the doc came and said it looked ok and I could go.

Jas came to chat just after the bronch, which I don't remember much of, but the general gist was that it was looking good, the joins between new lungs and old tubes was looking fine and there was still a little bit of sloughing of material from the lung walls, which probably explains the low level of sputum I'm still experiencing, but this was normal for the stage we are at.

They will ring me tomorrow evening or Friday with the biopsy results so I'll be hoping that the low level rejection (I now know this is officially called A1 rejection) has cleared up and I'm ok. If all is fine they plan to see me next week for a standard clinic check up and if I'm still ok they can then leave it for a couple of weeks so I have time off over Christmas and New Year.

Further developments

I just had a call from one of the nurses on the transplant team saying that there is 'some diarrhoea and vomiting' on the Chest Medical Unit (CMU) so it is unlikely that they will admit me for the bronch tomorrow as the risk is too high. I had the winter vomiting Norovirus last year (or was it the year before?) when I was in hospital for a CF chest infection and it was one of the worst experiences of my life - I've never felt so completely knocked out - so am extremely keen not to catch that again, especially with a severely compromised immune system.

So I am to come to clinic and do the nil-by-mouth thing just in case. Jas will make a call depending on the situation on the CMU and how I have been. I said to the nurse that I've been very well for the last couple of weeks, so I am thinking it looks fairly unlikely that I will be bronched. I think the scheduled bronch, if it wasn't for this little bout of rejection and increased steroids, would have been after 3 weeks rather than 2, so maybe Jas will delay the bronch by a week. Unfortunately that means if there were to be anything wrong in a week's time it would be that much more likely that I'd be confined to hospital over Christmas.

I guess I am severely counting chickens and should just wait and see what happens tomorrow.

The other bit of news that I haven't yet reported on the blog is the great improvement in my voice. After starting the higher dose of steroids it started coming back and after a couple of days the speaking voice was almost normal. Now I can speak completely fine and almost sing - the range is pretty much there, just the tone leaves something to be desired. I wonder if the anti-inflammatory effects of the steroids helped kick the vocal chords back into action, or whether it was just natural recovery? Whatever the reason, this is a most heartening development and it gives me some confidence that no lasting damage has been done and that I might even be able to sing again, with the bonus of real lung capacity - the thing that held me back in recent years. So here's to being able to sing along to some Christmas carols in due course!

Bronch tomorrow

My bronch has been moved to tomorrow from today, so I have one more day's respite before having to go through the procedure, the overnight stay in hospital and the nervous wait for the result. I've been feeling very good for the last week or two and so am hoping that everything is hunky dory. My steroids are back down to the more standard level of 15mg today, having tapered them off as instructed over the last 4 days - hopefully they can now stay there.

I just want to send my best wishes out to Mitch (www.checkonmitch.com) who has had a really hard month with infection, narrowing of airways and then to top it all some bleeding during his recent bronch that left him in ICU. I am just over one month behind Mitch on my Tx recovery and so am obviously a bit nervous and hoping quite hard that my third month is less eventful than his has been, and that there are no problems with bleeding in my bronch tomorrow...

Ah well, focus on the positive eh? I am having a very badly needed haircut today. Frankly I needed one before the operation and now it is looking faintly (ok, completely) ridiculous. And soon it will be 8 weeks which will mean I'm allowed to ride a bike, which will further increase my new found mobility freedoms. Onward and upward...

All the pills

I was just organising my drugs to try and make the routine and tracking of quantities easier and thought you might be amused to see a photo of my total current stock. You'll recognise the 'current pills' tray from the earlier photo.

Just call me Mr. Pharmacy...

A quick update

Sorry for my lack of posting for the last week. The old adage 'no news is good news' has applied, luckily. After getting discharged from hospital following the bronchoscopy I started the higher dose of steroids last Thursday. On Friday I suddenly felt a lot better and more human, and the feeling continued through the weekend and Monday. I had been sneezing a bit, and had a runny nose, and that stopped too.

Yesterday I felt rather more nauseated and the nose started playing up a bit. Today I feel much the same - better than before but slightly more fragile and tired. Partly, probably, due to a poor night's sleep last night. Maybe I'm getting a series of mild colds - it's very hard to tell what is really going on. Sometimes I feel completely time-shifted so I am totally asleep in the middle of the day (I've just awoken from an hour's nap), and then awake and restless when I go to bed at night.

The general message, though, is one of improvement and a feeling of normality slowly returning. I was even well enough on Monday to go with my Dad to Duxford air museum, where he's doing some work as a volunteer helping to maintain a large old flying boat called Catalina. He can get in free, so we had a look around the largely empty exhibits (a cold, rainy and windy Monday mid-morning is not peak time...) and had a nice boy/dad time discussing the technical matters of flight, different planes and the importance of a high bypass ratio for efficiency in jet engines...

Today I had a standard clinic appointment. Jas was away so I saw Little Mo, whose name I find out is Mahmoud. He seemed happy I was feeling ok and said the fluid is still on the bottom of both lungs (the remainder of that which he drained a few weeks ago) but I shouldn't be worried about as it is doing no harm. He showed me the area of white clouding on the X-ray and how he thought it had improved marginally since the last X-ray a week ago. I asked him to estimate the volume and he reckoned half to 1 litre of fluid (!) but still insisted it was best not to try and drain it. If you stick a needle in the risk of infection and turning it all to puss, or puncturing a lung, is too high to make it worth it. It shouldn't affect my ability to breathe in and he hopes it will dissipate over time.

I am to start tapering off the steroids back to 15mg after 10 days, so on Sunday I'll reduce to 25mg, Monday 20mg etc. and then on Tuesday next week go back for clinic and the follow-up bronch in the afternoon, with another overnight stay.

Vicky is doing more work, which is stressing her out a bit - that's work for you I guess. She's been working from home in the mornings and going to the office most afternoons. I fill my time with piano practice (Rachmaninov prelude in D major is my current thing. It is brilliant. Also my friend Sarah sent me a Mozart piano concerto with the orchestral accompaniment on CD which is hilarious fun - mostly because I can't hope to keep up with the orchestra as the thing whips by at such blistering pace and it is all right-hand passagework semiquavers for pages!), and watching box set DVDs on telly which several friends have been kind enought to gift/lend to me. There's always the Wii and PS2 to keep me busy too, as well, of course, as the odd bit of exercise here and there!

I have been meaning to post my experience of the call, the pre-op stuff, and waking up in intensive care - partly as it is a gap in the blog record and partly to document it for myself before I entirely forget what it was like. I did scribble a few notes in the early weeks in hospital to help remind myself, so I'll do it when I have the energy to revisit that rather traumatic time. 'Till then, keep well and warm everyone and don't get too stressed about the Christmas shopping...