My castles stand upon pillars of salt and pillars of sand

I've just got back from my four day stint at the transplant clinic at the Freeman Hospital in Newcastle. To say I was put through my paces is to underestimate somewhat. I had test after test, some of which were just blood tests so involved no effort at all from me except giving up my blood, but others required pushing me as hard as they possibly could.

Day one (as I feel inclined to say in a Geordie accent) I had a few chest X-Rays and the barrage of blood tests as well as a full medical work over to make sure there was nothing untoward other than the obvious and all the paperwork was done to admit me as a patient. In fact it was done in triplicate as I had to answer the exact same questions to three separate people.

Day Two was the start of more intensive tests, the first of which was the test (GPR test) to see whether my kidneys were working well, which involved injecting a radioisotope into one arm and then taking blood at periodic intervals to see how much of the radioisotope marker is still present. As soon as that was out the way I had to do the one thing I was dreading the most, the exertion test. I was taken to a corridor in the hospital which is of a specific length and has 10 metre intervals marked on brass plates on the skirting boards. They measure how far you can walk at one minute intervals up to a total of six minutes. I managed along the corridor and back before needing to take a break before trying a little bit more. They were very pleased with how I managed. This test is to ensure that you are strong enough to make it through the surgery if you are ever to be put forward for transplant. After a little recovery time I went for an ECG and a Cardiac echo to see if my heart is functioning, which I can tell you is fine, although a few of my medicines and my lung condition mean I have a very rapid heart beat.

I also met the Social Worker in the department that day and she was pleased to hear I had a decent handle on the benefits I'm entitled to but also provided me with literature that will allow me to apply for to help pay for the trips I will need to make down to Newcastle.

Day Three held my least favourite of all the tests I was going for - the dreaded pulmonary function tests, which calculate your lung capacity amongst other things. The last time I tried these tests I was so weak I couldn't even get the machines to register. This time it wasn't bad at all and I managed to do all the tests they required. Don't get me wrong the results are still on the shocking side but at least they could get a result this time. After this I got to spend a fair amount of time in the ultrasound room where all my internal organs were checked out. Following that I got injected with another radioisotope and then had a gamma ray scan of my lungs done. I'm beginning to wonder with all these radioactive materials and gamma rays just when my superhero powers are going to kick in. By the time I got back to the ward the transplant team were doing rounds and the Prof popped in to see me just to tell me they were collating everything and they would have their meeting at lunchtime the next day and let me know where we go from here straight after.

So Day Four was just a waiting game for this meeting. I thought I would be anxious but I sat there just passing the time until they arrived. The news was very much what they call a mixed bag. On almost all fronts I was a perfect candidate for transplant but there was an issue with my kidneys function and an issue with my cholesterol level. The cholesterol issue is easily remedied and it is only high because of the artificially high fat content of my diet over the last year or two when trying to put weight on. Now I have the right body mass I can just maintain it and take drugs to bring my level down. The kidney function is an another issue altogether. My kidney function is a problem because the immunosuppressant I take, Cyclosporin, has the side effect of damaging the kidneys. In the last few months I've slowly been lowering my dose of it in the hope of coming off it to see if my immune system is still attacking me but the plan now goes in the complete opposite direction. The doctors are advising that I start taking the full dose I would receive if I were to get a lung transplant to see if my kindeys can cope.

So the short version of things is that I'd be fine to get through the transplant operation but I might die of organ failure because my kidneys fail. As the idiom goes 'the surgery was a success but the patient died.' It would be reckless to proceed towards surgery at this point, not knowing how I would react immediately post transplant.

So what does this mean? It means that I have a few months ahead of blood tests to check kidney function and then I will go back down to Newcastle in three months to do the same GPR test to see how well my kidneys can remove the radioisotope.

I am now essentially on a provisional list as otherwise I am ready and just need this one big thing sorted.

On the drive home I started thinking about it in terms of cars. You can either look at it as an MOT where I need one major and one minor thing done to make me roadworthy. The other way I thought of looking at it is like a driving test where I had one major mistake and one minor - I'd have got away with just the minor but not the major one. Now I need to eradicate that major one and get this show on the road.

It was a real shock when the consultant Prof. told me but the knowledge that I only have three months to wait and only need to go down for a day and not have to go through the whole barrage of tests again was quite reassuring. He was very considerate in telling me everything whilst still making the facts clear which is a lot harder than you might think.

I also heard afterwards that none of the other patients who had come for assessment have been put forward without also having to do something particular to their own case to be put forward to the active transplant list. This made me feel better, even though I felt for those people, because it made the whole process feel like just a step on a road rather than the be all and end all. I'm still a lot closer to the active transplant list than I was on Monday and I need to keep that in mind.