Great Expectations – Aplastic Anemia Ups and Downs

Dear Readers,

Last week was challenging.  I noticed over Memorial Day weekend that I was feeling run down and tired.  By Tuesday, the day of my first doctor’s appointment of the week, I was sure I would need two units of blood.  I was fatigued to the point of needing to sit down in the shower.  Even the act of shampooing my hair was exhausting, and I had to lie on the couch for an hour afterwards.  I lost my breath walking from the bathroom to the kitchen.  I don’t live in Buckingham Palace, so that’s not a long walk.

Aplastic Anemia Blog - Palace

I don't live here.

As I’ve mentioned in previous posts, blood transfusions are a long process.  I generally expect to be at the hospital for at least six hours past my appointment time.  Therefore, on Tuesday I brought my laptop, books, iPod, and DVDs to the hospital, and geared up for a long day.  Except when the CBC results came back, my hemoglobin was 6.8 – much higher than expected.  A normal hemoglobin level is between 11-15, so 6.8 is still way under the ideal and certainly anemic.  However, what made my 6.8 particularly interesting was that it was the same number as reported at my previous appointment the week prior.  Meaning, my level stayed the same for five days.  This was big news for me.  Since the onset of my illness, I only lost points from day-to-day – never sustained or gained.  Every Aplastic Anemia patient waits for the day when they are told their body is producing more new cells than consuming.

I was dubious of the CBC results.  The severity of my fatigue seemed to indicate a lower number than 6.8.  I felt too tired to be functioning at a level higher than the upper 5s.  I asked the nurse to double-check.  She told me the lab called her personally and told her the report.  She even printed the day’s numbers from the online hospital records, which is where the lab inputs their findings.  When I saw the printout, there it was – 6.8.  I started to think maybe I was imagining my tiredness.  Perhaps I was fighting off some kind of infection, which might account for my lack of energy, as well as the little loss I saw in my white blood cell count (I dropped from 1.0 to 0.8).  The belief that I was beginning to make a recovery in my other cell values certainly tempered the disappointment of losing the white cells.  The doctor chose not to transfuse me with blood, since he wanted to see if I was able to sustain my number and perhaps even gain points.

My next appointment was only two days later.  I was still experiencing extreme weakness and light-headedness, but I was optimistic and hopeful that the CBC would show my hemoglobin level was the same or even higher.  When the results came back, I felt as though I was punched in the gut.  The number was 5.5 – a huge drop.  I have never dropped more than 0.5 over the course of 4-5 days.  I believe the lab results from the Tuesday prior were erroneous and my hemoglobin was in the upper fives on that day.  My doctor agrees with me.  In addition to that disappointment, my white cells were still at 0.8, and my platelets were 12,000.  I was ordered to receive two units of blood and a unit of platelets.

I was terribly depressed after receiving the CBC results.  I had allowed myself to hope there was a big improvement headed my way, despite my intuition to the contrary.  To top it off, the transfusion took longer than usual due to a combination of the World’s Slowest Nurse(TM) and a back-up at the blood bank.  I didn’t get released until midnight.  I cried from the moment I got the results until I got home, and didn’t feel much better the next day.

Living with Aplastic Anemia is a lesson in coping with disappointment.  Until my diagnosis, my greatest disappointments in life involved rejection; rejection from colleges, rejection from auditioners, rejection from jobs, rejections from men.  The stakes seemed high at the time, but compared to the stress and tension of awaiting medical test results, those earlier opportunities and subsequent rejections seem to me now to be the struggles of an extremely privileged individual.  The thing is, I never expected to be rejected by my own body.  Intellectually, I know it’s ludicrous to feel “rejected” by one’s biology, but the feeling persists nonetheless.

What I am learning is that for better or worse, disappointment is one of the possible consequences of hope and high expectations.  While the letdown can be devastating, I believe that maintaining one’s optimism in the face of overwhelmingly negative circumstances is extremely important to positive mental health.  While reaching a point of apathy might alleviate my sea of troubles, I would rather suffer the slings and arrows of outrageous fortune.

Aplastic Anemia Blog - Reticulocytes

Reticulocytes. You can tell they're immature because they have bad skin and are totally self-absorbed.

What’s important to remember is that fate can turn on a dime.  By my next appointment, the tides had turned once again.  The blood transfusion gave me a huge boost in my hemoglobin value – more than normal.  My white blood cell level was back to 1.0.  I also learned my body’s production of reticulocytes, immature red blood cells, is increasing.  While it’s not showing in the CBCs yet, it seems as though my body is starting to make new red cells, and the rate is accelerating.

The best news came from my doctor, who, in the standard vein of physicians, does not normally speak in absolutes.  I asked him a loaded question, which is something I avoid as I try to live by the policy “Don’t ask tough questions if you’re not prepared for tough answers.”  However, I broke my own rule and asked him directly whether he thinks the ATG is going to work.  Without hesitating, he replied “yes.”  If that’s not a cause for optimism, I don’t know what is.


AS OF 6/6/2011

Blood Value My Number Normal Range
WBC 1.0 4-11
RBC 2.78 3.67-5.11
Platelet 28,000 150,000-450,000
Hemoglobin 8.5 11.6-15.4
Polys 60% 50%-62%
Lymphs 26% 25%-40%
ABS Polys 0.6 1.8-8.0
ABS Lymphs 0.3 1.0-4.5

1 Comment (+add yours?)

  1. Julie Lawrence
    Jun 13, 2011 @ 17:15:12

    I was reading this post while I was in Colorado and let out a little cry when I read that your count had dropped. But I’m so glad it looks like you are making progress! Your attitude is amazing. You are amazing. I am rooting for you. Let me know if there is anything I can do to help in any way!


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