Playing the Numbers Game with Aplastic Anemia

I want to keep everyone up to date on my numbers every week, because unless I end up having a stem cell transplant, my blood values are going to be the only indicator of changes and/or progress.  At the end of each blog entry, I plan to post my counts in a lovely little readable table format.  Convenience!

Dearies,

“You don’t look sick!” is a sentence I hear a lot.  I even tell it to myself on an almost daily basis.  The truth is, unless you look carefully and happen to notice my skin is more pale and translucent than it used to be, or you see the spots of petechiae that crop up on my face and body as my platelet count decreases, or you observe the bruises that appear on my legs and arms from time to time, you probably wouldn’t know there’s anything wrong with me.  This is a source of both comfort and frustration as I deal with the daily ins and outs of Dis-Ease.  Of course, I would much rather look “normal” than sickly.  The only problem is trying to convince people, myself included, that I am very seriously ill.  This is compounded by the fact that I generally feel pretty good.  Without fevers, I only feel my illness when my hemoglobin drops and I get fatigued and light-headed.   When I look in the mirror and see someone who closely resembles the person I remember before contracting Aplastic Anemia, I begin to hope my blood values will reflect my appearance.

Aplastic Anemia Blog - Blood

One Unit of Blood

Since my last discharge from the hospital on April 6th, I have been recuperating at home and going to the hospital for Complete Blood Counts (CBCs) and doctor’s appointments at least twice a week.  The CBC is my routine cause of anxiety, as I hope to hear that my levels are high enough to warrant skipping a transfusion.  Platelet infusions take 25 minutes and are easy-peasy.  Blood transfusions are of much longer duration.  There is a two-hour waiting period from the time of the CBC in order to type my blood and make sure they have units of it in the bank.  After the two hours, I have to wait for the blood to be ordered from the bank, delivered, and infused.  On blood days, I expect to be at the hospital for at least six hours past my original appointment time.  As you can imagine, this is very frustrating and I still haven’t learned the virtue of patience.  I bring my computer, books, iPod, and other forms of entertainment with me to the hospital, but nothing beats being told I don’t need a transfusion and can go home!

As I have mentioned previously, I was discharged from the hospital with very, very low numbers.  I had been warned before beginning the ATG therapy that it can result in months and months of hospitalization due to patients’ reduced blood values and inability to fight infections.  Before my release, I received different opinions from different doctors.  While my main doctor felt I could leave, the more conservative of the bone marrow specialists on the team believed I needed to remain hospitalized since I was missing neutrophil granulocytes – bacteria fighting white blood cells.

Aplastic Anemia Blog - Neutrophil

This is a neutrophil!

A digression on neutrophils.  These little guys are very, very important to a healthy immune system.  Humans constantly come in contact with bacteria, including strains that live in and on the body.  Without neutrophils, bacteria can get out of control and cause deadly infections.  During the waiting period before I began ATG, my neutrophils were dying.  In January my neutrophils were at 0.6 (normal range is 1.8-8.0) and dropping.  After my second hospitalization in early February, the illness that caused my fever destroyed what was left of my little bacteria warriors and they dropped to 0.0.  I entered a new phase of Aplastic Anemia, which I am currently crawling out of – severe neutropenia.

Neutropenia is fun!  OK, that’s a lie.  It’s really goddamn awful.  My lifestyle had to change overnight (again, some more) to try to keep me as bacteria free as possible.  I was put on a low microbial diet.  Almost all my food has to be washed and cooked thoroughly.  No more sushi, no medium rare meat, and salads can only be eaten sparingly.  Until very recently, no restaurants were allowed, as not only are they full of germ carrying patrons, there’s no way to guarantee the chef and waiters don’t have nasty cases of plague while preparing my food and serving me.  Purell became my perfume.  Crowds, bars, alcohol, sex – all off-limits.  No shaving my legs.  Other fun side effects:  bleeding gums, mouth sores, and nose bleeds.  FUN!

Despite my neutropenia, while I was in the hospital I managed not to get any bacterial infections.  All my illnesses were caused by my Epstein-Barr virus.  As I reported in my last post, the virus pushed my body to create lymphocytes, which eventually made up almost the entirety of my minuscule white blood count (0.1 at the time).  I’m not knocking lymphocytes, but what I really needed (and still need) were neutrophils (otherwise known as polys or granulocytes).  Time to confuse you – “ABS Poly”, which means Absolute Poly Count, denotes the number of neutrophils in the blood.  If I refer to my “ABS Poly” or “Poly Count” in upcoming posts, hopefully you’ll remember what it means.  I have put a vocabulary list at the bottom of this entry to help you, my dear readers.  By the end of my Aplastic Anemia Adventure, you and I will all be amateur hematologists.

The good news is that after nearly six weeks out of the hospital, I am beginning to show signs of recovery.  When ATG is successful, it takes on average two months post infusion to see even minor changes in the CBC numbers, and three to six months to see even better counts.  I was told in the hospital and subsequently that the cells that indicate the beginning of recovery are the granulocytes.  Since the second week of April, I have been showing a rise in those cells and my poly count has gone up.  I am still neutropenic, but I am nearly out now.  White cells are the first to come back from this disease.  Opinions vary about what recovers next, platelets or red blood, but it depends more on the individual patient and their body.

One thing to keep in mind, numbers change from day to day in each and every one of us.  The human body never has the exact same amount of blood values one day to the next.  It’s easy with Aplastic Anemia and other bone marrow failure disorders to get caught up in the CBC numbers, as we Warriors have to look at them weekly, if not every day.  The trick is to be patient (no easy feat) and look for the pattern of stability and incline over an extended period of time.

Aplastic Anemia Blog - Lily

A metaphor!

Cells multiply exponentially.  As a metaphor/math problem, imagine a pond with a single water lily.  Water lilies double every day.  If it takes 180 days to cover the pond with water lilies, on which day is the pond half full?  The answer is, of course, the 179th day.  In other words, it takes time to see results.

I’m just happy my numbers are rising.  I am still way below the normal range for blood counts, but the truth is that I may never fall within the average again, even if I fully recover.  My body may create a “new normal.”  My below average numbers should not impact my ability to fight infections, my longevity, or my ability to have children.  The million-dollar question is whether or not my bone marrow will recover enough to allow me to make more cells than I lose and stop needing transfusions.  If not, I will have to move to the next treatment – a stem cell transplant.  Only time will tell how my body reacts.  Statistically, my odds of success with a transplant are much higher if it is performed within two years of diagnosis.  So, I’ve got a little time to wait and see.  In the meantime, I am grateful for my relative good health, my rising counts, and my bright future.

—————————————————————-

VOCABULARY:

Polys/Neutrophils – Neutrophil Granulocytes or Polymorphonuclear Neutrophils:  category of white blood cells that are one of the first responders to inflammation, particularly as a result of bacterial infection, environmental exposure, and some cancers.

Lymphocytes:  White blood cells that mainly attack viruses.  They are divided into large granular lymphocytes and small lymphocytes.  Large granular lymphocytes include natural killer cells (NK cells).  Small lymphocytes consist of T cells and B cells.

Hemoglobin:  Protein in the blood that transports oxygen from the lungs to the rest of the body.

Platelets:  Cells that are involved in hemostasis (the process that causes bleeding to stop), leading to the formation of blood clots.

ABS Poly – Absolute Poly Count or Absolute Neutrophil Count:  measure of the number of neutrophil granulocytes present in the blood.

ABS Lymphs – Absolute Lymphocyte Count:  measure of the number of lymphocytes present in the blood.

Poly __%:  The percentage of white blood cells present that are neutrophils/polys.

Lymphs __%:  The percentage of white blood cells present that are lymphocytes.

WBC Count:  The number of white blood cells present in the bloodstream.

RBC Count:  The number of red blood cells present in the bloodstream.

Platelet Count:  The number of platelets present in the bloodstream.

—————————————————————-

MY BLOOD VALUES
AS OF 5/16/2011

Blood Value My Number Normal Range
WBC 1.0 4-11
RBC 1.92 3.67-5.11
Platelet 23,000 150,000-450,000
Hemoglobin 5.9* 11.6-15.4
Polys 60% 50%-62%
Lymphs 28% 25%-40%
ABS Polys 0.6 1.8-8.0
ABS Lymphs 0.3 1.0-4.5

* I was transfused with two units of blood due to this value.

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4 Comments (+add yours?)

  1. Dawnzo
    May 17, 2011 @ 14:58:02

    I’m so happy to hear your numbers are improving. Also to learn so much new vocabulary! I hope that your condition only continues to improve from here. Are visitors welcome at your place? I’d love to see you again when the time is right! 😀

    Reply

  2. Belinda
    May 17, 2011 @ 15:30:21

    bunny- this is very good news. there is an old saying I like to say when it feels like I have a situation that is soooo big and overwhelming. How do you eat an elephant? — One bite at a time. I have often thought of this in terms of your current situation. One agonizing step at a time heading up that mountain. Sugar, I applaud your tenacity and upbeat attitude. Hope to see you soon.

    Reply

  3. hotshot bald cop
    Aug 30, 2011 @ 14:51:17

    You my pal are a genius

    Reply

  4. Low Platelet Count
    Sep 10, 2011 @ 10:07:49

    Heya i am for the first time here. I came across this board and I in finding It truly helpful & it helped me out a lot. I hope to give one thing back and aid others such as you helped me.

    Reply

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