Clinic day

It's been a very long day. The taxi arrived this morning at 9:55am and I had to direct the driver much of the way through London as his SatNav was giving him a very odd choice of route. I had taken some Codeine just before the journey, which was useful, and I managed to recline the seat quite a bit too, so it wasn't too uncomfortable.

I reached Kings at 11:10am after a clear journey, and bought a sandwich and sat around waiting. At 11:45 I went over to the Clinical Trials Nurse's office, only to find that she was 2 floors away in the outpatients - apparently there was a mix-up about when I was arriving (I'm sure she'd said 11:45 but she said it was 11:30). Anyway, I got my blood-tests done, then headed over to the Ultrasound department. The scan was really quite painful as they were being thorough and pressing the scanning head quite hard all over the tender bits of my wound, but fortunately it showed excellent blood flow, and no trapped fluid (which would have indicated more serious infection problems). 

From there I went back to the office, and the clinical trial nurse confirmed I will come back on Tuesday, though they will ring me tomorrow if I need to adjust my immunosuppression dose to get within the accepted blood-levels to start the clinical trial.

I went up to my old ward - Todd Ward - to see if one of my old neighbours was still around. Unfortunately he was in the intensive care unit having some treatment, so I couldn't see him. However, I did meet a few of my old favourite nurses and they were really pleased to see me doing so well. I sat in the Todd waiting area and wrote a few emails. While I was there a really loud alarm went off and people started running all over the place. Within minutes someone's shocked-looking relative was being ushered in and sat down, and the nurses explained that the person he was visiting had gone in to cardiac arrest. It was amazing - like a scene from E.R. - and quite startling. I asked the guy if I could get him anything but he really didn't want to talk - he was staring in to space. Unfortunately 5 minutes later we were evicted from the waiting area by a cleaner and I had to leave, so I hope it turned out ok.

Even though it was 90 minutes before my official appointment I was really pleased that reception said they'd try and squeeze me in there and then. I got chatting to a rather sweet old American lady who was coming for her yearly checkup - she'd been transplanted in Kings in 1999 and had been doing amazingly well since. She was due to see Dr. O'Grady (my consultant who I hadn't seen since before my transplant as he'd been on holiday), and so she sat in a chair by his consulting room and I sat next to her. 

Dr. O'Grady appeared at the door and did a double-take when he saw me sitting there. I overheard him mumble to the sister in charge of the clinic that he would be seeing me and to take me off the other doctors list. I couldn't help grinning. I waited for him to finish with the American lady, then he smiled at me and invited me in.

"David, I've stolen you from Dr. Block's list without asking - you don't have to see me of course, it is up to you...", he said with his fairly deadpan trademark expression, though his eyes were twinkling. I really like the guy now I've got to know him. Of course I was more than delighted to see him. I remarked that I had timed my operation and recuperation in hospital exactly to coincide with his holiday, and he noted how well I was looking. He asked me how I had got on in hospital and what the experience had been like, and I asked after his holiday (South Africa, it turned out, and we spent a few minutes enthusing to each other about safaris).

He looked genuinely delighted when I said how incredibly wonderful it was to have no itching, easy sleep, and better concentration - he really did look on the verge of slightly emotional about it which is remarkable! I asked all sorts of questions to get little details of my treatment clarified, and we talked through all my current drug regimen and the clinical trial. I'm sure that whoever was supposed to be his 2nd appointment must have been getting livid outside, but he seemed in no rush at all which was great.

He examined my wound and the infected bits and said there was really nothing to be too concerned about - a course of antibiotics (flucloxicin) would sort it out. He also said that as I was seeing the clinical trial people on Tuesday there was no need to come in again on the Thursday, and that he'd see me in a fortnight's time. Brilliant! Finally he reduced my steroid dose (prednisolone) down by a further 5mg, which is also a relief as that's probably the nastiest drug, and reassured me that my current tremor and shakiness was due to the high-dose immunosuppressant and would gradually fade as the dose came down.

I really felt so much better after talking to him, and left on a bit of a high. No blood-tests to do, so I headed straight down to book a taxi and pick up my prescription from the hospital pharmacy. Apart from a slight mix-up with taxi bookings, I was away within 15 minutes. By this time I was really quite tired, and sore, and so I reclined my seat again and let the driver get on with carving his way through the fairly revoltingly heavy traffic. It took us nearly one and three quarter hours to get back (though his speed of 55 mph on the motorway did us no favours) and I finally got back home at around 5.15pm.

So, this evening I've taken 2 of my 4 antibiotics for the day. My pill count is down one for the steroid, but up 4 for the antibiotic. He said that the 8 paracetamols could be cut as soon as I'm ready, and just use them with the codeine for breakthrough pain. So I'm up to 35 pills, with the option to cutting down to 27. Also the antiviral will be cut almost certainly next week so I'll then be down a further 5.

We're getting there. I think today is the first of the next set of steps forward...