Thursday, June 3, 2010

91,000

That was the platelet count, a nice climb, likely all from the Ivig 5 days earlier, so it is still getting the job done, though with rapidly diminishing potency and duration of action.

The cyclosporin wouldn't likely have worked this quickly.

The rituximab infusion today was a non-event, but I have the hiccups. BP is till OK, but lymphocytes may be climbing slowly. The steroids in the premeds are keeping me up.

Stay the new course I say. May tweak the IVig- higher dose, different brand.

I am more optimistic, but I have a big lecture on gout to give in Las Vegas, and that will be my focus for the next two days.

That and being there for two friends heading to transplant before the end of the month.

I now have some breathing room again.

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Tuesday, November 17, 2009

Crash Landing

My high flying days are behind me.

Today's lab report hit me like a midair collision.

My platelets have taken a nosedive to 38,000- About a drop of 200,000 in 13 days.

That is getting dangerously close to dangerous levels. Normal is >150,000. Dr. Kipps asked me three time if I had any nosebleeds or bruises.

Maybe it was a bad batch of IVIG. Dr Kipps thinks that's a possibility. I think it is his kind way to give me something to hope for.

Looks like I will be hitting the 'roids again soon. Looks like a shaved head and a N95 mask are coming soon to a blog near you.

Looks like a second transplant.

My platelets may have been decimated, but hey I am still going. Only slight growth of the palpable nodes. The rest of the blood count is good. Enough red cells and not too many white ones. The CLL isn't mounting a frontal assault, it has just turned my body against itself. It is trying to kill me with my own immune system.

Emergency IVIG tomorrow. Had to cancel a full load of patients at the last moment.

Recheck lab on Friday- then make my plans.

This stinks, but I am alive and motivated.

And I am so glad that I paused to soak in the wonder of the last week. I will never lose the imprint of that magic. That is a feeling, a joy, that will abide.

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Monday, August 24, 2009

208

That is the number in thousands of platelets I have in the average microliter (10 to the minus 6) of my blood. If my math is right, that a trillion or so platelets coursing through my veins. If platelets were dollars, I could be part of the economic stimulus package

Looks like the IVIG worked, or the bottom was reached, or the fall, now reversing, was just the toxic effects of high dose EGCG.

When I saw the report on the computer screen, the fire engine red coloring for abnormal results was gladly missing. The printout is more prosaic black and white.

Now the trick is to not overreact both to the good and bad news.

Off for a long bike ride and I will go surfing this week for sure. First I need to check the dings on my board and find my old rack. Or maybe I will just rent a board.

Hang gliding? Why not if the winds right.

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Wednesday, August 19, 2009

Double digits

My platelets fell below 100,00o today (OK they were 99,000), but they are continuing to fall to the tune of 10,000 a day. Sounds like the stock market last autumn.

Also had my bone marrow biopsy (this is going hurt he said and he didn't lie), and that will help determine the wisest course.

That said, the fog is a bit thick these days, but the shadows are becoming clearer and I am sensing a narrow precarious but manageable path not just out of the present danger, but onto a freeway that leads to a crotchety old age.

I will get a low dose of of IVIG on Friday to buy some time and more importantly some platelets.

So much to write, but I must prepare for a CME teleconference tomorrow on Sleep-Wake disorders, so please forgive me for my scant posting in these critical moments. I promise I will try to shine a light on these twists and turns very soon.

For now, be assured the game is on, and I still have a few winning tricks up my sleeve.

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Sunday, August 16, 2009

It's the platelets, stupid

My CT findings so long anticipated and so critical in the assessment of where I was and where I was going have been rendered moot by the drop in platelets.

If tomorrow's blood count confirms a downward trend in those critically important hemorrhage stopping cells, then I am surely marching towards a second transplant with just a few detours to get the body ready for the long trip ahead. The speed and the exact route would be yet undetermined. but the endgame is clear.

The platelet count trumps everything.

Tomorrow I will have the new CBC.

Tomorrow, after I finish my very therapeutic deep purging of the old papers and undone projects in my office, I will share my thinking about my new status and my new plans based on those results and the CT. I am surprisingly confident of the ultimate outcome.

Let's hope for a big jump up in the platelets, making all my noodling about them as big waste of time.

Hold on. This could be a wild ride. Or maybe not.

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Thursday, August 13, 2009

Platelets falling

This blog was begun long after I had passed though the rocky shores of critically low platelets from the auto-immune destruction by my wayward immune system known by the acronym ITP. It was not a pleasant journey, much worse and far more dangerous than the CLL itself.

When I checked my blood today in preparation for my CT scan I was dismayed to see my platelets had fallen from over 350,000 on July 27 to a low normal 142,000 Aug 12. While that is still a very safe level, it is the sudden fall that makes me bite my nails.

This is even more of a concern because I had IViG on July 16, known to raise platelets for those with ITP.

It could be a lab error, but if it is the beginning of a trend, my party is over and it is time to move with alacrity.

I am trying to stay calm until I get the recheck.

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