Wednesday, 25 August 2010


Macaronner: to mix the ingredients for Macaroons (or French Macarons).

That's what I've been doing this afternoon on a very pleasant day's holiday - making Salted Butter Caramel Macarons. It is very hard getting these little biscuits right and the whole process took about 4 hours.

If you're interested the recipe is here:

The oven is rubbish so out of 50 halves that went in only 20 were
usable and 10 perfect and looking like this:

The recipe is basically Pierre Herme, and you can buy his version in Selfridges for £1.70 each! After 4 hours I understand why!

Saturday, 21 August 2010

Day 2 - Cycling

Well I definitely didn't win the cycling! There were a lot of blokes with a lot of gear, including the man who won the event in the last world games. He did the 5km in 8:12 - I did it in 14:18. To get bronze in my age group of 30-39 I would have had to get under 10:45.

All that said I think I did pretty well. I was certainly not slowest and I think I worked harder physically doing that 4 laps of Victoria Park, Bath than I've ever worked before. It was a cruel course with a really nasty hill and each time up it was more of a struggle.

Everyone was very supportive and most of the fast guys, if I said I was only 10 months post-transplant and, by the way, it was a double lung for CF, seemed genuinely impressed.

I just need to grow bigger legs!

- Posted using BlogPress from my iPhone

Friday, 20 August 2010

Table tennis done...

After being cripplingly nervous last night and this morning I've survived the table tennis competition - and before you ask, no I didn't win. I won one and lost 2 in my group so didn't quite progress to the second round. I was very annoyed as there was one guy I really should have beaten and one I almost beat. year...

At the opening ceremony last night I got to hold the Papworth placard as I was new to the team.

And here's a photo of the three of us in the Papworth team who did the TT.

- Posted using BlogPress from my iPhone

Wednesday, 18 August 2010

Radio fame and the games

It's the British Transplant Games this weekend in Bath and I'll be doing the 5km cycling time trial and the table tennis competition. I'm dead nervous and I reckon it'll be a fairly hopeless performance from me, but hey it's worth a go.

I had a call out of the blue yesterday afternoon from BBC Radio Cambridgeshire and then they rang back to do a little interview about my 'story' and the fact I was taking part in the games 10 months after transplant. It was broadcast yesterday at about 5:20pm on the Drive Time show.

If you want to hear what I had to say, and how posh I sound (an awful surprise for me!), then you can get the show on BBC iplayer (I think this only works if you're in the UK).

Start listening at 1h18m18s.

After this weekend I'm sure we'll do an update with photos of the experience of the Games!

Tuesday, 17 August 2010


The short answer is: probably not.

I finally got my appointment with the upper GI surgeon at Addenbrookes last Friday. He is a fairly humourless Australian, but maybe that's what you want from a surgeon - the lack of humour, that is, not necessarily the Australian-ness.

Backtracking a bit, I had Papworth clinic last Wednesday and met with Jas, who showed me some pretty convincing evidence from a study carried out at Duke in the US on transplantees and fundoplication. The whole study is here: but the key interesting graphs I thought I'd copy in.

Fig. 1. Average FEV1 values in lung transplant recipients who also underwent fundoplication surgery for treatment of reflux. Patients were at least 6 months from both their lung transplants and fundoplication procedures to allow stabilization of pulmonary function. A significant improvement in FEV1 was documented in this group after fundoplication.

Fig. 2. Effect of GERD on survival: Kaplan-Meier actuarial survival curves for overall lung transplant recipients compared with the group of lung transplant recipients who also underwent fundoplication surgery after being evaluated for GERD. The fundoplication group had a significant survival advantage.

p.s. GERD stands for Gastro-esophageal reflux disorder.

Fig. 3. Effect of fundoplication on survival. Kaplan-Meier actuarial survival curves for patients evaluated for reflux by 24-hour pH studies, comparing the group with documented reflux versus the group with no reflux. A significant survival advantage was seen in the patients with normal pH studies.

Fig. 4. Kaplan-Meier actuarial allograft survival curves: allograft survival of at least 6 months to adjust for differences between organs on the basis of early technical variables. A, Overall allograft survival (6-month survivors) for patients undergoing kidney, heart, and lung transplantation, documenting a worse outcome in lung transplant recipients. B, Overall allograft survival in lung transplant recipients who did not have reflux or whose reflux was corrected by means of fundoplication compared with recipients of kidney or heart transplants. Allograft survival among the 3 groups was almost identical.

What I get out of this is that even though this isn't a controlled double-blind trial there is some significant evidence here that:
  • Doing a fundoplication stops acid reflux, and people with reflux don't survive as long as those without
  • Doing a fundoplication might increase my FEV1
  • Lung transplant people don't have as good survival as hearts and kidneys, but if you do a fundoplication you might get a similar survival stat to those heart and kidney people.
Now, talking to the GI surgeon I mentioned this study and he said he wasn't as convinced as Jas at Papworth was by these results. "It won't be guaranteed to solve all your problems" he said. But he did agree that having reflux and possibly aspirating that stomach contents into the lungs is always going to be a bad thing. He has done 30 procedures on lung transplant people and all of them were happy they had the procedure. There are the obvious downsides to do with the recovery period of liquids, then soups, then mushy food, and the possibility of never being able to manage big chunks of meat or dry bread - and of course losing some weight during recovery.

All in all I know it is something I need to do, but something I wish I didn't have to go through. Another surgery, another general anaesthetic, another recovery. It shouldn't be anywhere near the same scale of discomfort as the transplant as it is a laproscopic (keyhole) surgery - so I'll end up with another 5 little scars on my front - 4 for tools, and 1 for the camera.

On Friday afternoon the surgeon performed a gastroscopy on me to have a look around down there. It was very unpleasant as I seem to have a pretty active gag reflex, and he said there was still a lot of sludge in my stomach, even though I hadn't eaten since the previous evening (OK, so it was a blow out dinner for my Dad's birthday, but I didn't admit that to him!). He said reflux can also have the effect of slowing down digestive transit, so that could be part of the reason. There was a tiny hiatus hernia, where a little bit of stomach pokes up through the diaphragm, but that is fixed during the procedure too.

The surgery has been booked in for 21st September, 5 weeks today.

Thursday, 5 August 2010

Blows and bad dreams

My blows came back to normal, even setting a new record last Sunday. Since then things have dropped back a little, but hopefully not enough to be worried (about a 4% drop from the record blow). This is all generally encouraging, in that I can get some rejection, be treated and bounce right back after a couple of weeks. I've held the pred at 10mg for 5 days now, delaying dropping back to 5mg because of the little drop in blows.

I find myself quite a stressed person these last few weeks. Work pressure doesn't help, with nebulous projects and a lack of resource making me worry. That combined with impending endoscopy and consultation about the nissen fundoplication, the continuing anxiety about lung function, and the Transplant Games in two weeks time is resulting in a bit of a tricky period.

I don't know if it is because of this or because of drugs, or sugar levels, but I have had unsettling dreams for the last couple of weeks. I know the steroids can give you nightmares, but mine are continuing even through the reduction in dose. I guess it is a combination of factors.

The dreams are generally meetings with doctors where I am told things are going terribly wrong, or, like last night, where I start coughing up CF-style sputum again and the doctors say there is nothing that can be done. I wake up and breathe, try a few little coughs, and after a few minutes convince myself it isn't real. But it is certainly not conducive to waking up feeling relaxed and ready to face work and the world. I hope it stops soon.