Today was a good news day. Things have started to fall into place.
After my blood tests, Ming (my clinical nurse) contacted me to say that the red blood cell count was low and I would need another blood transfusion. Luckily I was still in hospital and was able to have another blood test for what they call “Group and Hold” – basically a check on blood type to ensure they provide you with the correct blood during transfusion. The results take 2 hours.
Rather than wait around for results and then the 3-4 hours for the transfusion I opted to return tomorrow afternoon (after Jan and I visit the Royal Commission and have lunch with a friend in the city) for the transfusion. The counts were not dangerously low so no one seemed too concerned about this.
The blood counts from today were: Red Blood Cells 80, White Blood Cells 4.6 (normal range), Platelets 27, Neutrophils 3.4 (normal range), Creatinine 93 and magnesium and potassium in the normal range.
However it was the meeting with my consultant Amit Khot that was the most encouraging. He has advised that the bone marrow is working well for only one out of the three blood cell lineages. These lineages produce new blood cells to return my system to normal health.
- The granulocyte (immune cell) lineage produces neutrophils (to help combat disease and infection). This is going well.
- The megakaryocyte lineage produces the platelets which help with blood clotting. Although not in the normal range this seems to be reasonably stable and in time should improve. Amit is not concerned.
- The erythropoietic lineage produces the red blood cells. This lineage is not yet stable and may take up to a year to stabilise – so patience is required. Once again Amit is not concerned about the slow progress. Since January I have had 13 blood transfusions and there will be more to come!
Amit also advised I can start cutting back on many of the drugs I am taking. The immuno suppressant cyclosporin which I have been taking twice a day since my transplant in January can be stopped (this also means dropping off the 3 magnesium tablets a day as they are directly related to the dose of cyclosporin). The steroid – prednisolone will be stopped in a week but the second steroid budesonide not for another month. Both were being taken for my GVHD of the gut. The immuno suppressant Posaconazole can be stopped in a few weeks.
At the peak I was taking 40 tablets a day – from tomorrow it will be just 9. What a relief. There is a way forward after all!
I have been worried about my ‘fat little steroid face’ somewhat and quizzed Amit on how long until my previous good looks return! His answer “This will take some time” in fact up to 2-3 months once I stop the steroids. Luckily I am not a vain person – I’ll just have to go with the ‘overweight’ look even though I am still 6 kgs below my normal weight!
My other concern has been my eyes. I have found trouble focusing on reading later in the day. Amit assures me this is simply a result of muscle fatigue and that this will return to normal in due course.
What we have been up to lately in Melbourne.
Rather than stay at home we have made an effort to get out and about and do a few things like:
Travel up to Lake Mountain – a small cross country ski resort near Marysville. This was a beautiful day out.
Visit the Banking Royal Commission, which has been quite interesting especially when you work out how Mr Hodge trys to set his trap for the NAB executives.
Visitors include the Tucker family from Wagga. We popped Dougall in as he is good friends with Henry and Ruby Tucker.
Drinks with Duncan McFarlane (our old uni friend who now lives in Cambridge). Sorry Nick but you chose to be at work rather than socialise with your wife! Duncan’s dad Brian on the right.
A quick trip down to Geelong to see the final year production of Beauty and the Beast.
A nice lunch with with Eric and Dagmara Saacks. Eric flys a plane similar to mine and we have been aviation buddies for a few years now. He was in Melbourne for an orthodontics conference (and a short holiday). We had a great catch up.