Thursday, 2 September 2010

T+132: Déjà Vu Again

We're back in hospital. Kay was admitted earlier today because she has been extremely sick the last 24 hours, four times during the night and roughly every 30 mins during the morning. In the afternoon it slowed down and so far this evening she's not been sick. However she's developed other symptoms, a low oxygen saturation, a fever and a general feeling of being unwell. Also, because of the sickness her mineral levels are low. Since she's been admitted she's been put on intravenous antibiotics and minerals and I have to say that she's improved somewhat. However the big worry is that her blood counts have dropped again. Take a look at the graphic below:

The green line is Kay's white cell count, the blue line her red cell count. The transaction shown at point A shows the typical improvement in Kay's red cell count after 1.5 units of red blood. The green 'mountain range' in the middle of the graph shows how her white cell count rose and then dropped in the middle of June. The point B shows what happened to her red cell count just before the crash in her overall counts: a transfusion caused a much smaller increase in her red cell counts. This indicated that her bone marrow had already crashed w.r.t. red cell production. The drop in the white cell count followed shortly after.

Look at the area C, you can see a similar thing. Kay's white cell count has climbed and then started dropping. What is really bothering me this evening is area D. Kay had 1.5 units of red blood on Monday and it's had a much lower effect on her red cell count. This implies to me that we can expect another crash in her white cell count in the coming days. If that happens, we'll be back where we were 10 weeks ago.

The specialist is thinking the same thing, I suspect. The CMV virus load in Kay's system has been very slowly increasing during the last weeks and is now at 3x10e4. Lower than 10 weeks ago (then 10e5), but higher than 3 weeks ago. She suspects that the drop in Kay's counts maybe caused by the CMV virus. She has already switched Kay from the CMV/BK virus antiviral - cidofovir - that she's been on for the last 5 weeks or so back to the previous CMV only antiviral, Foscanet. Again, this worries me because we know that Foscanet suppressed bone marrow activity. So if this continues we can expect Kay's bone marrow to crash again and another long battle with the CMV virus to ensue. I expect that this will result in Kay needing the postponed bone marrow boost (and another long stay in hospital). Certainly Foscanet can only be given intravenously and the dosage is 3x per day.

Ok, I hear you say, stop crossing bridges before you get to them. And you would be quite right to say that to me. And it's exactly what I should do. But this is the problem that I have long feared: that Kay's bone marrow cannot recover due the CMV virus load but that can't recover due to the treatment for this problem either. Also it's not clear to me, or anyone else I suspect, that the BK virus has gone and thus stopping the cidofovir may result in its return.

On the plus side, Kay is getting VIP treatment from the staff here. We have been given a super room and a dedicated nurse for this evening. Everyone is focussed on making her comfortable and trying to cheer her up. This is a good thing because Kay is absolutely mentally and physically exhausted. She's unable to sleep at night due to lots of nameless fears that circulate in her head. She's going to need lots of support in the coming days I suspect.

All in all this has all the attributes of a very worrying situation. It looks to me very much like what happened in June. Let's hope that there's a simpler and more innocent explaination.

In the meantime Marion & I have to start living split lives again, running backwards and forwards to Nijmegen. Oh boy.

2 comments:

  1. Your use of graphs reminds me of my favourite financial journalist, John Authers at the FT. His video commentaries, available as 4 minute clips online in ft.com ("The Short View") were compulsive viewing during the credit crunch. A central feature of each day's contribution was a piece of graphical analysis, showing you the movement of interest rates or credit spreads or whatever. I looked back over his stuff, many of the videos I watched passionately over this period of 2007-8 - before, during and after the credit crunch and with hindsight another truth becomes apparent. In the hands of a clever and articulate journalist, cross correlations of different indicators can produce a new and persuasive story every day.

    ***

    Well, I said in an earlier comment that, as a pilot, you are used to reading the instruments and making the right decisions in real time, despite very difficult conditions all around you. I believe that rquires very different behaviour than financial journalists (or bankers for that matter) just because you are able to look at projections and then live in the present, knowing that a trend can be turned around.

    I hope for you and for Kay that the situation can be brought under control.

    Love,

    James

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  2. My heart goes out to Kay and your entire amazing family. I wish that sweet girl could catch a break. Thinking of all of you.

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