At present I am meeting with my haematologist once a month so I guess that is a reasonable cycle to update everyone on how my health is progressing.
Today was another ‘Telehealth” session with Amit Khot. This is a simple process of basically Skyping him at the appropriate time (and of course waiting the obligatory half hour or so while he gets through his backlog of patients!).
Today’s consult was very straight forward. Amit firstly reviews my latest blood test results (from last Friday in Launceston) and then suggests changes to drugs if required.
The good news is that I have started to wean again from the Prednisolone (steroids) and have reduced this down from 20mg per day to 15mg. Each step down will occur after two weeks and this time rather than reducing from 10 to 5mgs Amit would like to step down to 7.5mg. This will spread the weaning process out to at least 3 months.
Amit indicated this is perhaps the best way to ‘train’ my body to overcome the GVHD problems I am currently experiencing. He indicated the GVHD will come and go throughout the next 12 months and steroids will be a tool which is used to fight this disease. At least I know my brother’s immune system is strong and operating well within my body!
At present I feel very well and on most days I would rate my health as 80-90% of what was ‘normal’ although this can vary quite unexpectedly. Tiredness and a lack of energy would be the most obvious things that have an impact on how I feel but in the scheme of things this is quite minor. At least I can get ‘out and about’ and do most things that you would consider to be part of a ‘normal life’.
I have not experienced problems with abdominal pain or diarrhoea in the past month or so which has been very pleasing.
All in all things are progressing well and I feel like I have ‘climbed a ladder’, recovering from the last slippery snake that took me backwards last month.
My Haemoglobin is steady at 128, White Blood Cells 10.3, Neutrophils 8.2, Platelets 168 and Creatinine 96 – all results are in, or close to, the normal range.
And on top of that my liver function has almost fully recovered and according to Amit is of no great concern at this stage.
I am currently in the process of re-applying for my pilot’s licence which involves getting a letter of review from Amit plus results from a brain MRI and CT Scan of my body. Although these tests are unrelated to the Leukaemia it appears that CASA believe you will ‘drop dead’ as soon as you step into an aeroplane and want to check out all possibilities before they allow you to fly again.
We have had a great few weeks with plenty of visitors in Tassie (which we love) and a trip to Melbourne and Wagga to catch up with friends and business matters, thanks for having us to stay Liz and Pete Dowling. I even managed a day at the Avalon Air show which got me thinking about getting back in the air once again.