On Saturday we re-located to Tassie after 14 months of living in Melbourne. This was a big milestone and one I’d been looking forward to for a long time. We certainly had lots of bags (and Sparky) to get back home after so long away.
We met up with our BMT consultant, Amit Khot last Friday to discuss the move which he was happy with. The last set of blood results were once again very stable and the exciting news is that my Haemoglobin level seems to be holding up at over 100. The normal range is above 120 so I appear to be close.
However the medical team (both Amit and my Clinical Nurse, Ming Xie) would not be drawn on the idea that my bone marrow might be now functioning to full capacity. It is possible but the high level may well be the normal ups and downs that you can experience post bone marrow transplant. We will have to wait and see.
The platelets, white blood cells and neutrophils are all holding up well as follows:
Hbs – 112
WBC – 9.7
Neutrophils – 7.4
Platelets – 119 (notice a drop from last week mostly due to the steroids).
My liver enzyme results have improved slightly over the past week as well.
We will still need to see Amit on a monthly basis in Melbourne but he has briefed a haematologist at Launceston General Hospital in case things don’t go to the plan. He is happy for blood tests every 10 days or so in Tassie, with results being sent through to Peter Mac when they are processed. The CMV checks still need to be performed by pathology in Melbourne as the Tassie pathology services don’t have the ability to process this one apparently.
I am still on a huge cocktail of drugs, almost 30 tablets a day, but the doctors are slowly weaning me off the steroids. This will take another month when hopefully I’ll be back to just 5 or six tablets a day.
The longer term prognosis for the GVHD is that it may well take many months to pass, with periods of re-recurrence from time to time. My condition is now considered to be in the ‘chronic’ stage. It will be something that is treated with steroids (and the other drugs to combat the side-effects), but generally not considered life threatening.
Today I checked in with my local GP, Myrle Gray who originally diagnosed my condition back in August 2017. Myrle was certainly pleased to see me in good health.
To my surprise she indicated they can provide a full blood service at the tiny surgery/hospital in Campbell Town (our local village about 15 minutes from our farm). They can take blood samples in the morning and have results that afternoon as a pathology car drives between Launceston and Hobart daily ferrying blood samples between pathology laboratories.
And if I need a blood transfusion (which is highly likely) this can also be performed at the Campbell Town hospital – saving me a much longer trip into Launceston.
We have certainly enjoyed returning to our new farm and home in Tassie and have attempted to pick up where we suddenly left off over 14 months ago.
We enjoyed a great catch up with Will and Louise Baylis before we left Melbourne. Will is a high powered funds manager in Melbourne while Lou runs their farm west of Geelong.
Claire arrived in Tassie on Sunday afternoon for a few days R & R test!
And Dougall jumped on my new motorbike in Melbourne on Sunday and came across on the Spirit of Tasmania that night. He arrived soaking wet on Monday morning – nice to see the rain!
Knox and Cate Heggaton (Knox leases our farm) joined us for lunch on Monday – (which was a public holiday in northern Tassie only!) and provided us with a great farm tour that afternoon. The place is nice and green and looks a picture with lots of lovely chubby lambs in most paddocks. So far the terrible mainland drought has stayed away from Tassie.
I will keep you up to date as news changes or new blood tests come in probably only every 10-14 days from now on – a very exciting prospect!