Monday, 21 December 2009

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 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, 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.

Friday, 18 December 2009

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!

Wednesday, 16 December 2009

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.

Tuesday, 15 December 2009

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 ( 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...

Wednesday, 9 December 2009

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...

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.