Friday, 2 July 2010

CF Annual Review

The way it works at Papworth hospital is that at the point of transplant you are handed over from the CF team to the transplant continuing care team. The CF crew have done all they can for those poor old scarred and clogged up lungs and once they are out of the picture, so to speak, it's more about looking after the new set and the Transplant team are the experts there.

There are, of course, the other aspects of CF: Digestion, possible onset of diabetes, liver disease, bone density and so on. To keep an eye on all of these bits the CF team continue with the annual reviews, where they do every test under the sun - a full annual MOT. Today I went for this year's.

Needless to say, my blows were a lot better than last year. A LOT. They produce a graph showing your % predicted (for your height, gender and age) FEV1 (1 second forced expired volume) from every CF clinic visit since records began, which for me is the last 15 years. That's quite a lot of data. It is actually remarkably interesting, especially if you're a bit of a spod like me, so I've copied it in below with some arrows to interesting events, and some explanation (click on the graph to enlarge):

So interesting things to note:
  • I never had above 50% FEV1 from the age of 20 (in 1995), until now!
  • The introduction of DNase is understandable when you look at the gradual decline over the previous two years
  • I used to really bounce straight back from infections - look at the first University one, and the Africa one - later on with the nasty infections I took a step down each time and never really got the lung function back. In the old days the antibiotics really worked - it was the infection hitting the lung function - clear the crap, suddenly you can breathe again. Later on the underlying lung damage was prevalent and didn't allow me to recover.
  • The Africa trip was a fabulous month of messing around in East Africa, and I thought the risk of not taking DNase with me (how do you keep it refrigerated when backpacking??) would be worth! I've never quite understood how I survived the flight home from Zanzibar - let's just say I don't remember much of it and was probably in a hypoxic stupor...
  • Starting the nebulised antibiotics gave me a lot of stability - see how the variation in lung function between visits is markedly reduced? It gave me a good 4-5 years extra time.
  • 'Aint it just the coolest jump up in lung function at the end? 20% predicted to 90% in one hit!
So, go and sign up for the donor register, because this really works and a lot more people deserve to get transplants than currently do.


  1. Anyone who is reading this blog and isn't on the transplant register ought to be highly ashamed of themselves. Someone wrote in last Saturday's Guardian that they fear that joining the register will somehow hasten their death. How utterly ridiculous. Smoking, drinking to excess or stepping out on front of a bus may hasten your death. Anyone who thinks joining the transplant register will do so must also believe that fairies live at the end of their garden. Get a life - and give life once yours is over.
    Rant rant rant! Will, it's fabulous to see that vertical spike in the graph. Absolutely wonderful. Time for that Pimm's, I think :o)

  2. Unbelievable graph, and we heard the results as well !!

  3. That's pretty groovy. As a nerd myself I like it. It's your very own hockey stick!

  4. Was wonderful to see (and hear!) you I said then, I can honestly say I have never seen you looking so well in the last 15+ years - long may it continue!!!!

    I am already on the Organ Donor Register, and I regularly donate blood as well. This week is Transplant Week - please join the ODR if you can!