My last post was 12 months ago to the week and I am pleased to report that everything is going along pretty smoothly. It is 5 years since my diagnosis and life could not be better!
I had toyed with the idea of finishing up the Blog but my son Lachy encouraged me to keep it alive as it may just help a few people understand the condition they are dealing with. And within a few weeks of that conversation a good friend Geoff Daniel was diagnosed with AML and he is now starting the long gruesome journey that I have been on over the past 5 years.
I am still attending Peter Mac every 3 months for ECP treatment plus IVIG infusions. I usually back this up with appointments with Amit and my dermatologist.
At this month’s appointment Amit confirmed that my condition had indeed stabilised – with a planned long slow weaning off the drugs. This could take more than 2 years but Amit is confident that I have seen the worst of the skin disease – yipee!
I must say I was very happy to hear this as any worsening of my skin condition would be alarming. There are times at present when I have some trouble breathing due to the physical constriction of my tightened skin. It is like wearing a corset.
I am still on a range of steroids and immunosuppressants plus ECP and UVA light treatment which, along with regular stretching and yoga, appears to be keeping my condition manageable.
I regularly see a respiratory physiotherapist who has given me a range of breathing exercises in order to strengthen my diaphragm and improve lung capacity. Regular Lung Function Tests confirm minimal reduction in lung capacity which is pleasing.
We are spending most of our time on the farm helping our daughter Claire and partner Toby who have taken over the lease this year. They have dived in the deep end without any great farm experience and now run a 2000ha sheep farm.
Recently we took our new hybrid camper up to Queensland with friends and spent a week sailing around the Whitsundays. It was certainly a trip of a life time.
I am lucky to be able to fly regularly, play tennis, ride my Adventure motorbike with friends and jump on a mountain bike from time to time. I must say 5 years ago I certainly didn’t expect that life would be so good!