Thursday, December 25, 2008

My Christmas lump of coal

On the eve of Christmas Eve I had a little too much egg nog with brandy. One thing I have learned over time is that alcohol really does thin the blood, so to speak. Indeed, studies show that low hemoglobin can accompany chronic alcoholism. My excuse for low hemoglobin is autoimmmune hemolytic anemia resulting from my CLL (though if life keeps getting more stressful I may decide to add chronic alcoholism to the list).

Hemolysis, in which the body destroys its own red blood cells, is the thing to watch for in AIHA. It can come on suddenly, and over time I have become ade
pt at looking for the signs and signals. Catching hemolysis early on is essential to keeping it in check. The more it begins to snowball, to use a seasonal metaphor, the more it can get out of control, requiring tougher steps to control it. Oh, and there’s that little thing about putting your life in danger as your body runs out of red blood cells. You never want that particular Elvis to leave the building.

If there is a decline in my hemoglobin, the first thing I usually notice is a pounding in my ears. What I’m hearing is my heart pumping away, and when HGB is really low, it’s like a marching band. When HGB is just a bit low, it’s like an occasional lone drummer offstage. When HGB is normal, I don't hear it at all.

Well, the Little Drummer Boy was busy as I tossed and turned in bed a few hours after placing my nog-drenched frame in the prone position. The easiest way for me to tell how my HGB is doing is to drink a lot, then go to bed. That’s ju
st one of the tricks of the AIHA trade that your doctor probably won’t tell you about.

Sure enough, blood tests the next day -- I have that holiday miracle, a doctor who answers her cell phone on Christmas Eve -- confirm that I’m hemolyzing again. On Dec. 2 all my red counts were normal. Twenty-two days later the HGB was down to 11.6 (from 13.5), the MCH and RDW were high, and overall RBC was 3.66, down from 4.47. My LDH, which measures turnover of cellular activity -- as in red cells being chomped by macrophages -- had gone from mid-normal to high-normal, and total bilirubin was now at the very top of normal, meaning debris was moving through the liver.


Results of the Direct Coombs, haptoglobin and reticulocyte tests will have to wait until Friday or Monday. But based on past experience, what we have here is active hemolysis, not quite out of control but definitely past the Miss Manners stage of fine macrophage dining.

So, hello Decadron. Hello, doctor next week. Hello, chemo very soon.

And hello, CLL curveball. As they used to say on Monty Python, “Nobody expects the Spanish Inquisition!” We CLLers with active disease had be
tter learn to expect it at any time, and that includes holidays.

8 comments:

Anonymous said...

I am quite surprised that your "inner self" (or is it you inner ear?) is that sensitive. Most people would not detect a drop in Hemoglobin from 13.5 to 11.5 unless it was precipitous or unless they had severe cardiopulmonary disease.

In any case, it is good to get "on top' of things quickly. The preliminary indications are consistent with hemolysis, but the Coombs test and haptoglobin will be more telling.

Either way, some therapy or some investigation (one can lose blood via the GI tract without realizing it, so if there is no evidence of hemolysis or marrow impaction this needs to be investigated) will be needed.

I am sorry to hear this news and wish you the best.

DWCLL

Anonymous said...

David, I am sad to hear this, and I wish you swift and effective treatment and that you'll soon be feeling good again.
Julie

Grateful said...

Sorry to hear of this latest turn of events. Hope your New Year is better!

David Arenson said...

I have excellent hearing. Marilyn jokes that if I were a comic book character, hearing would be one of my super powers. Staying in touch with my own body is really the only early warning system I have for avoiding runaway hemolysis. So I have learned to look for the slightest telltale signs. So far I have been right every time. It is very important for patients to know that hemolysis can bring your red counts down fast but that it can take months and months to get them back up to where they were. So the sooner you find out something's wrong and take action to deal with it, the better.

Fortunately the Decadron seems to be working, and my thanks to all for their good wishes. The Little Drummer Boy has shut up.

I meet with the doc next week to go over options. There are many factors at play in making a therapy decision and I hope to blog about them at some point fairly soon.

Anonymous said...

I've had the pounding in the ears several times. The first time it happened I thought it might be idiopathic high blood pressure. It resolved without incident that day.

It's happened twice since, both times when I knew I was anemic. It's quite depressing because it's a tip-off that CLL is making a move.

CLLers live with the possibility of this or something else (like an infection) every single day. It wears on you. You wonder if that sore throat will put you in the hospital.

CLL is a very cruel disease.

Deb Light said...

Wishing you well David and saying a prayer for you!

Glad you caught it early!!Take care and keep us informed.

God Bless,
Deb
www.cllcfriends.com

Anonymous said...

Love you bro and thinking of you!I hope you feel better soon.

Anonymous said...

Hi David:

I wish you the best in 2009. Hope this current CLL blip is adjusted. Peace.

Trisha