Month: December 2018

This will be my last blog (well at least for quite some time) as things are moving along well and I don’t have much to report on a weekly or even monthly basis.

I would like to thank everyone for their wonderful support and well wishes to both Jan  and I during the year.  It has been very encouraging and certainly a big help with my recovery.

We would like to wish everyone a wonderful Christmas and festive season and a great New Year.  Hopefully mine will continue to see improvement and by this time next year things will be even better still.

My last tests were very encouraging as all blood counts have bounced back up again.

Red Blood Cells (Hb) –  121, White Blood Cells (Wcc) – 6.9, Platelets – 96, Neutrophils – 3.7, Potassium – 4.6, Magnesium – 0.71 and Creatinine 96.

After the previous tests where the blood counts had all started to drop off this is quite good news.

Jan and I met with Amit Khot, our BMT consultant, in Melbourne last Friday.  He was happy with progress and has kept me on a low dose of steroids to help with the lingering GVHD of my liver.  This is one aspect that will probably plague me for many months but being in the chronic phase is not life threatening.  Unfortunately the downside of remaining on steroids is the need to take a large number of other drugs to counter act the side effects.  I am down to around 24 tablets each day!

With Acute Myeloid Leukaemia (AML) the survival rates continually improve with each month that passes post Bone Marrow Transplant.  Unlike most cancers where after 5 years without a relapse you are considered to be cured with AML this milestone is around 2 years.  Most re-lapses occur within this timeframe.  If you are clear at two years post transplant then there is a 95% chance of survival.  They will never guarantee 100%!

Amit tells me my immune system is probably around 70-80% of a fully functioning system so although reasonably robust I still need to take precautions.  He has recommended using a mask when gardening or mowing the lawn to avoid fungal infections.

I asked my medical team if my bone marrow was now fully functional and although they have acknowledged this is stable and should not fluctuate wildly they would not say too much more – haematology is a non-precise science!

The other interesting fact is that my blood group will change to my brother’s.  I am O and he is A.

When people’s blood group changes, it is common to see a big drop in haemoglobin, sometimes requiring transfusion. Eventually I will transition from O+ to A+, and when it happens, I will see a Hb drop, or if the blood tests show that Hb suddenly starts to drop, it is assumed the blood group might be changing, and I will need to repeat a ‘group and screen’ (blood test), to see if my blood group is changing, and if there are new antibodies being developed.

Other matters

We have enjoyed being back in Tassie and had a few people over for a paddock BBQ one weekend.  Dougall had a few mates for the weekend including one of his buddies from  Yale.

Last weekend we travelled up to Wagga for various functions and stayed with good friends the Zacharia’s.  We haven’t seen Bernie and Zac for a number or years but it seemed just like the other day.  The Preddy’s joined us for dinner on Saturday.

My parents celebrated their 60th wedding anniversary and we had a wonderful family get together at the Hyatt Canberra Hotel which was the place of their wedding reception back in 1957.

 

This week I travelled into our local village, Campbell Town, for blood tests.  The doctor Myrle Gray was not 100% sure on how many tubes to collect but after a quick call to the pathology lab worked out that 5 was going to be sufficient.

She had some trouble with my veins telling me that they were quite calloused – no doubt from the repeated needles for blood tests over the past few months (and the blood donations over many years prior).

The results were encouraging although my haemoglobin had dropped from the magic 120 back to 112 this week (don’t tell CASA).

White Blood Cells were 5.3 and Platelets 74 (quite a drop from the last blood test of 97).  Neutrophils have also dropped from 5.4 to 2.9 and Creatinine is now 93.

My haematologist has indicated that the blood counts will bounce around somewhat from test to test  but I must admit I am a little concerned that most seem be trending downwards.  This may be due to the steroids which I am slowly being weaned off.

This week I have reduced the steroids from 5mg each day to 5mg every second day.  Hopefully I will  be able to drop them completely in two weeks, together with the other 30 odd tablets I take each day (well just getting below 10 tablets a day would be fantastic!).

Not a lot has happened in Tassie this week other than a few trips into town, some gardening, helping Dougall with some fencing and general farm duties.

I did attend a Firearms training course on Sunday, which is required to gain my firearms licence in Tasmania.  Unfortunately my NSW licence is not transferable.  The course was well run and I certainly picked up a few pointers.

 

Sparky made a trip to the Vet today as she has a few grass seeds in her legs that are causing her grief.  This is simply due to the fact that her legs are not long enough to get above the barley grass seeds – she really can’t compete with the Kelpies!

I must say it is great to be back home, with some fresh air and sunshine.