A Big Day - an Appointment with the Chest Consultant

Tuesday 12th February 2008

Tina and I go down to Brighton General Hospital for a 4.10pm appointment with Dr Mark Jackson, the chest consultant. I had spoken with him briefly back in November when I had my bronchoscopy and liked him.. He turned out to be even better than that! We had not even 0.1% hope or expectation that he would disagree with Steve Devereux about the risks involved with going into a stem cell transplant. Therefore there was less likelihood of our being disappointed with what he had to tell us. In fact it turns out to be informative, helpful and positive in lots of ways. Firstly, his opinion is to strongly advise against the transplant as the risk would be too great, although not quantifiable in any percentage terms. His main concern, over and above the risk of Pseudomonas, is that I would get a recurrence of the fungal infection, Aspergillus, which could set up a fatal septicaemia. We discuss the history of my Bronchiectasis, with the thinking that it could have started as long as five years ago or so, when I had a persistent chesty cough some months before my initial CLL diagnosis. The Pseudomonas would definitely have come along much later, taking advantage of my low immune system and the condition of my lungs.

Not surprisingly, he finds a load of crackles in my chest. He also identifies that I have classic Brochiectasis finger nails - which is called “clubbing“. Apparently they run level with the backs of my fingers instead of there being a dip at the quick. I could not see what he means, but he makes a point of showing the feature to the three student doctors who are sitting-in on the consultation. He has of course courteously asked me if I minded them seeing me stripped to waist - they were all young ladies! I say that I am sure they had all seen a pigeon chest before!

He tells me that whilst my Bronchiectasis could get worse, the daily lung clearing physiotherapy and keeping a watchful eye for possible infection, are the right things to do to keep on top of it. The more I allow secretions to accumulate, the greater risk that they might become infectious. But I must live with the Bronchiectasis for the rest of my life and therefore live with the need for daily lung evacuation. He says it a good idea to have a few phials at home, should a sample be needed. He will also recommend to the Haemotology Team that I come off Ciprofloxacin and go on to Colomycin by nebuliser. The reason for this is that Ciprofloxacin is more appropriate as a treatment medication, with Colomycin as a prophylactic. Should I get an infection, it could then be treated with Ciprofloxacin, otherwise the only treatment available would be hospitalised intra-venous anti-biotics. Another piece of better news is that my latent Pseudomonas and Aspergillus are not infectious to other people, so I will now be able to take Communion wine. I ask him whether the Bronchiectasis is the cause of my daily tiredness or the breathlessness I experience when walking up hill. Not so! I have lost no lung capacity and my blood/oxygen levels are very good. My tiredness and breathlessness is more likely the result of my past year’s treatment, which will have taken an awful lot out of me.

The last piece of news is the icing on the cake, as I tentatively ask his opinion about my going back to some part-time work. I explain what this would entail and his response is that he thinks it would be very good for me, as it would help me build up my strength. Wow! That is so much better than I expected. I will of course check this out with Steve Devereux when I next see him at Kings, but it gives me such a lift. Tina and I leave really encouraged by everything he said. He will send me a copy of his letter to the Haemotology Team.