Monday, 22 February 2010

The weird and the wonderful

No particular news at the moment (which is good news in itself I suppose), but here are a few anecdotes to keep you going:

1) The weird

A few nights ago our landline rang at 11.30pm. Will and I were well tucked up in bed. The short version of the story is that I eventually answered the phone - it was a slightly confused Will's mum - there was no drama and I went back to bed. The longer version emerged when I talked to Will about it in the morning and discovered we'd shared an identical thought pattern on hearing the phone ring:
- Oh my god, it's The Call, they must have lungs for Will.
- No, wait, Will already got his lungs.
- So are they giving him another pair?
- Nope, that doesn't happen.
- They must be ringing to tell us his lungs have stopped working.
- But why are they doing that in the middle of the night? And how do they know??
Took a while for the adrenalin to subside, I can tell you.

2) The wonderful

a) We realised that at Will's last clinic appointment, when they hooked him up to do his obs, we were so busy looking at the blood pressure numbers that we completely forgot to even look at his oxygen saturation. How times have changed.

b) On Saturday we went to a wedding and we cheesy-wedding-danced until the music stopped at midnight. The last time we made it to the end of a wedding was our own, 22 months ago.

Thursday, 11 February 2010

Clinic update

A very quick post to say that I had my clinic appointment today and everything was fine. Jas was happy with my progress and is dropping the steroids down again a little bit, to 10mg/day - on the way to their eventual target of 5mg. The Neoral immunosuppressant levels are also a little high, so that's likely to drop too, and from previous experience even a small decrease in the Neoral dose makes me feel quite a lot better and more human, so that's good news.

I also took part in a clinical study today where they are using their brand spanking new posh and incredibly expensive looking CT scanner to take pictures of various patients at different stages of lung chronic rejection to see if CT scans could be used in future to diagnose early signs of rejection, cutting down on the number of bronchs that need to be done. I was injected with a marker that makes the blood vessels supplying the lungs show up very well under the CT scanner's X-rays and then rode the machine (it's one of those ones where you lie on a bed and it swooshes you back and forth through a do-nut ring shaped scanner). The marker injection makes you feel extremely weird - a hot flush all over and the sensation you have let go of all the bodily functions down below...

This week I also endured the oesophegal manometry and ph study which was very unpleasant. Having a well-lubed (KY jelly tastes bad!) flexible sensor about half the diameter of a pencil shoved up your nose and then 60cm down into your stomach is not great. Having it then taped to the side of your face and left there for 24h is close to maddening. Gives you a very sore throat. The results of all that will come in the next few weeks and that will tell them whether I need the other operation to sort out the reflux. Sounds fairly likely to me at this stage as there are real benefits to the long term health of the lungs.

Back to clinic in 3 weeks. I'm now on an 'every 3-weeks' regime until the 6-month point, which is the next major milestone.

Sunday, 7 February 2010

Holidays, tests and work (?!)

Sorry it has been so long since I last posted anything, but life has been so normal that I haven't felt there is much to write about. I have sailed past the 100 day post op mark (today is 107), my PFTs (pumonary function tests) are gradually going up as I nail the technique of using the little machine and find it easier to push out all the air without it hurting my ribcage so much.

Vicky mentioned in her last post from the train down to London that we were packing mercifully light for a weekend away. It was just fantastic. This kind of thing was just competely impossible before - for one, I was pretty unable to do the required amount of walking to visit the big city (every walk to a tube train, every set of stairs in a station, was a real trial), and secondly we would have had to be carrying the NIPPV ventilator, the portable Oxygen concentrator, a nebuliser, a cool bag with ice blocks to keep the DNase and TOBI nebs cold, as well as the normal packing for a weekend away. Not very portable on public transport! This trip we each had our work bags and carried everything around with us all weekend as we saw various friends across the city. It was joyous!

We also spent a long weekend away in Aldeburgh on the Suffolk coast, as a trial first mini-holiday. We didn't want to go too far away from the hospital just in case, and it was great to go back to Aldeburgh after being there last summer, just before the transplant. Again the pre-post transplant transformation made us both very happy and we could indulge in long walks on the marshes and along the beach. One of the nicest things is being able to offer to be the one who walks to the other end of the village to get fish and chips for supper, where before I would have always been too tired and such jobs would default to Vicky. We had incredible bright sunshine, but absolutely freezing temperatures which made it simultaneously beautiful and painful as the windchill ripped into our faces on the walks. I don't have any photos to share with you as we forgot to take the camera - our drive for light packing obviously got the better of us!

On the recovery process, tests and monitoring, it has now been 3.5 weeks since the last bronchoscopy. As you may remember, after that bronch they lowered the dose of the steroids and the Neoral. They haven't checked the levels in my blood since, so I hope they are ok and they know what they are doing! I am going back to clinic next Thursday, which will be a month since the bronch. Hopefully all will be well and I'll be released for another month.

Before that, I have a Oesephegal Manometry and PH Study tomorrow. This is all related to the acid reflux problems I was having, especially just after the op. Things have improved a lot, but there is still a bit going on and, as I wrote before, breathing in the acidic air that comes up can be very damaging for transplanted lungs, so they like to get it sorted. I had the barium swallow a while ago which showed no physical problems with the gullet and no particular reflux, but they still want to study the acidity (PH) down there to make sure things are ok. If not ok, this could lead to a small operation where they tighten the sphincter that joins the gullet to the stomach, to stop the acid coming up. So, tomorrow morning I shall have a catheter (thin tube) stuffed up my nose and down my throat into my gullet, where it will stay for 24 hours. The PH readings are transmitted to a data recorder that sits on your belt. I am allowed to go home (but won't be showing myself in public!) and then have to return on Tuesday morning to have it removed. Hopefully it won't be too uncomfortable...

The possible return to the world of work is on the horizon, as my doctor's sick note runs out at the end of next week. I could renew it if I felt I needed to, but a big part of me would like to get back to work and engage my brain a bit. I've agreed with work that I can start gently, with a couple of days a week and then ramp up as I feel fit. I haven't actually asked the docs at Papworth yet, so will see what they say on Thursday and then take it from there.

It is very easy to feel like it is necessary to make some kind of massive life change after going through an experience like this. You feel you've been given a new lease of life and you need to make the most of it. You are only too aware of the survival statistics and the fact the good times won't last forever - the chronic rejection will start at some point, and it is hard to predict when. So do we go and live by the seaside, Vicky become the bread winner and I live some kind of idyllic life of leisure where I play the piano, compose a symphony, write a novel... It's easy to fall into these kind of reveries, but I reckon there is a big dose of 'grass is greener' syndrome here. I know from my experience of the last 3 months spent at home that I haven't played the piano as much as I would have liked, haven't composed music, haven't written much. Sure, I've been recovering and Vicky thinks I am far too hard on myself, but I suspect that given a life of leisure I would fritter it away with daytime TV, surfing the internet and playing video games rather than achieving much that would make me happy. So on balance I think the best thing is to try and return to the life I had before, enjoy being good at my job. At least give it a go, anyway. If I find it becomes soul destroying and I am constantly thinking 'why am I wasting so much of my days stuck in this office' then I can think again. I also realise now, more than I did at the time, that work was becoming increasingly untenable before the transplant. The very fact I managed to continue working 4 days/week right up to the day of the operation amazes me. Looking back I realised I was pretty useless at work and spent a good proportion of my time absolutely shattered, elbows on desk and head in hands feeling pretty deoxygenated and awful. So a return to the workplace with some energy to actually do the job well should be satisfying and fulfilling. Here's hoping!