Assessment day 1

Transplant assessment is all about trying to get as much information as possible to allow the doctors to make the most informed recommendation to me that they can. The problem is that there is a lot of uncertainty, both in the amount of time I’ll have to wait for organs and in what happens to me while I’m waiting - how well I can stay. So they try to assess my ‘trajectory’ of decline, and judge whether it is speeding up or is gradual and constant. They also determine my blood typing (group and antibodies) and the physical size of my chest cavity (through a CT Scan). This will tell them which unfortunate donors will be able to offer me their lungs.

…and that’s the thing that must be remembered through this whole process, that a new set of lungs for me represents a tragedy for a family somewhere. It may have been head injury, road traffic accident, stroke, cardiac arrest (with no lung damage) - all sorts of possibilities.

So anyway, the assessment itself took three days between Monday and Wednesday this week. Day 1 was all about tests. I did lung function tests that measure your lung capacity (mine: 2.45L, normal: 4-6L), the amount you can blow out in 1 second (mine: 25% capacity, normal: 90%), how well the gas transfer is working across the lungs (I heard in the past mine was about 6% of normal…). They also make you do a 6 minute walk to look at pulse rate and oxygen saturation in your blood. Normal folk breathe a bit harder when exercising and the saturation stays at 98-100%. My rest saturation without Oxygen is ~88% if I do nothing, and drops rapidly as soon as I start moving around. I did the walk with 4 Litres/min Oxygen (fairly high flow) and dropped to around 83% walking at a moderate pace.

In other words, the lungs are rubbish. This is Type II Lung Failure - where the scarring and inflamation from 34 years of infection has meant the tiny tubes at the bottom of the lungs, next to where the gas transfer takes place, have blocked up.

On day 1 I also had an echocardiogram, which is a detailed Ultrasound of the heart to look at whether there are any heart problems such as pulmonary hypertension, which can happen when the lungs are compromised and the heart has to work very hard. Luckily my heart is fine.

After all the tests I spent the night in a cubby hole style room in Papworth. Luckily I managed to escape hospital dinner (the food is truly disasterous in the evening, lunch is just about bearable). Vicky and I drove out to a nearby village pub and tried to finish some unfeasibly large portions of unreconstructed pub food. Nice.