I Finish the Ambisome and Have Another Bronchoscopy

Saturday 17th to Sunday 18th November 2007

I have not slept too well probably because I slept so much yesterday. I eventually get up and have a tentative breakfast of porridge. I am not feeling hungry but know I must try to eat something. We have a lazy morning and my lunch is soup and some avocado pear. I have a visit from Michel after lunch and then rest up for the remainder of the afternoon. Strangely, I have two mugs of tea. I cannot remember the last time I had tea and enjoyed it! I have a cheese omelette for dinner but cannot taste it and rest up for the evening.

I manage some porridge again on Sunday morning, starting late and go to 10.30am Mass at Keymer. We arrive late, leave early and sit at the back, behind the glass screen. This is to avoid the risk of contact with a lot of people. Matthew, Charrise and the girls come for lunch, but I am feeling rather weary by 1pm, before they have arrived, and go up for an hour’s sleep. That helps. Tina’s Spanish pork casserole is good as usual. Today’s Observer carries an article about Pseudomonas as the new “super bug” causing fatalities in hospitals alongside MRSA and C. Difficile. Not very reassuring!

Friday 16th November 2007

I am “nil by mouth” from midnight and am woken up by staff nurse Leo about 6.40am for a blood test and to set up my platelets infusion, which runs for two hours. There is some confusion as to how I should get to the Endoscopy suite, but eventually I am escorted by two porters and a trolley bed! I have my procedure semi-prone - which feels strange - as opposed to sitting upright at Kings. However everything else seems to be better and I am conscious throughout, despite the sedation. Again it is something not to be repeated in a hurry! Kate Hurt carries out the procedure with the consultant, a Dr. Jackson, looking on with two rather interested students. There is the calming presence of a nurse - Jill - at my arm giving me reassurance and using a suction instrument in my mouth. Phase two - the obtaining of mucus samples doesn’t work and it is thought the instrument is faulty. Not so - a lump of my mucus had blocked the tube! At the end I am told that they have some good samples to check for bugs. However, Dr Jackson says that my airways are dilated; I will need physio-therapy and intra-venous anti-biotics as part of a plan to set me up for my transplant. He mentions Pseudomonas as a particular issue. He will be in touch with Tim Corbett about this and the results of the examination of the samples.

I feel quite good as I am moved into the recovery room, where I rest for an hour, but with a headache coming on strong. I ask for some paracetamol but cannot be given any as I am not on my ward. As I am being pushed back to my ward I am sick, although I have not eaten since 9pm the night before. I am told it is bile and that I am probably de-hydrated. I am given paracetamol, I should drink sips of water and I have some soup for my lunch. I then rest for another two hours before Tina comes to take me home. I am feeling a bit groggy and am glad I did not have to drive myself. Ten minutes into our journey and I am sick again. This is not nice at all! We get home to find the heating off and the house freezing because of a power cut. I go straight to bed and stay there. I am feeling lousy and just sleep. I have no food but keep on with the water.

In my post today I have a notification from Andre Jansen at Kings of a provisional admission date on 10th December for my transplant. Having learned what I have today about my chest problems, I wonder if this is yet another unlikely target date.

Monday 12th to Thursday 15th November 2007

I am into my third week of Ambisome treatment. There is some confusion over the dosage today due to some bad handwriting(!) but Santa is able to sort it out. I have my usual Monday Hickman line “care”, blood tests and then see Tim Corbett in his clinic. My chest is still the main topic of conversation. I am to have a CT scan tomorrow and another bronchoscopy on Friday - deep joy! I still have bits of rash on my chest and arms, so there is something still causing an allergic reaction. There are no conclusions on that, but perhaps it could be the Ambisome? My weight today is 75 kgs and my blood results are - Wbc: 5.8; Neuts: 3.9; Lymph: 1.2; Hbn: 10.4; PLT: 65.

I check my blog on Tuesday and find I have a comment from Danny Tall, my good friend from my very first Kings experience back in February. He had the “all clear” at his last clinic, which is great news. In the afternoon I have my Ambisome in the Day Unit and then go for my CT scan. There is no time for blood tests today.

We have a lazy morning on Wednesday and then Tina and I go to Brighton together. I have my last session of Ambisome and it is decided I should move on to Voraconozole, a tablet form of anti-fungal treatment - 200mg twice daily. My blood results today are: Wbc: 6.4; Neuts:4.6; Hbn: 10.6; and PLT: 65. It is arranged that I should come back tomorrow morning for a chat with a doctor from the Chest Team about my bronchoscopy.

On Thursday I see Dr Kate Hurt from the Chest Team about tomorrow’s bronchoscopy. I am to come in later today to stay overnight, so that I can be given some platelets before the procedure. Although I am prescribed a month’s supply of Voraconozole, I am only given two weeks’ worth at the hospital pharmacy; typical! I don’t have the inclination to take issue with them about it, besides my two hours parking is about to expire! Tina brings me back to the RSCH at 6.30pm and I have a room in the Haematology Ward. Familiar territory.