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 adept 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 just 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 better learn to expect it at any time, and that includes holidays.
Reflections on year of both great progress and great sadness in the CLL world - Happy New Year. This year we lost 3 members of our local Orange County CLL Society support group, and I lost other 3 other dear CLL and CAR-T friends that ...
2 weeks ago