I had a fantastic weekend!
Saturday I had enough energy to do some clearing up in the workshop of my tools that were scattered over the work benches where they had sat since May when I went into hospital.
Then my friend John came over and together we finished the high performance exhaust system on my Evo 6.5. He hack-sawed the pipe, I welded it and then he bolted on the car. By the end of the day I was worn out but very happy that I'd done so much. It was certainly the best day I'd had in the last six months.
Sunday I felt a little worse for wear and by Monday a complete write-off.
Today when I went in for more blood the answer was obvious: My haemoglobin was down to 82, the lowest count I've ever had!
I spent all day getting the two units each of blood and platelets (they were down to a count of 1) and did some thinking. The Tuesday/Friday schedule just wasn't working. The platelets were probably only good for raising my counts for a day, the rest of the time I was flying without a parachute. Whats the point of having a transfusion that only gives me less than 50% protection?
Then there's the haemoglobin. I'd been trying to keep my minimum count at around 105 and then transfusing to always be above that. But I'd had a good count early last week and made the mistake of only asking for one unit of blood. This meant that by the time Friday came around my counts were in the low 90's and most of the two units I got went towards topping that up and not actually giving me the benefit of a reasonable blood count that afforded me some oxygen to my muscles. Hence fatigue set in after only a day and half.
I spoke with the duty doctor and suggested that somehow we needed to get three units of blood into me in one day and that we needed to change the frequency of the transfusions to three times a week.
Monday, Wednesday and Friday being the best option. She agreed as did the senior nurse who is responsible for the schedules. So that's now the new plan: Keep the bloods at a more consistent level and try to iron out the big dips that leave me open to bleeding and fatigue.
This new schedule starts next week. This Friday I will arrive super early and get three units of blood to bring my baseline haemoglobin back to something sensible (for me).
I had a heart scan this morning to see if there was any damage from the last infection. The technician couldn't really say anything but what she did say was that my heart muscle was in good shape considering it's "running flat out". I'm sure that if there was a problem with the heart valves I would have heard from one of the doctors during the long six hour wait while getting blood today. ;)
So far I've managed to avoid any infections (I guess had I not you wouldn't be reading this!) which pleases the docs no end. I think they have strong fears that I'll end up in ICU again. That's something I am absolutely determined not to have happen. I doubt, as they do, that I'd come out alive.
I love a challenge and I can't think of a better one than staying a live! :)
..Ron
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