The Story of My Blood

aplastic anemia personal story
I was in complete emotional turmoil and I have a terrible poker face.
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A good deed.  That's what I thought I was doing that day.  The company I worked for was hosting a blood drive and I had an appointment.  I was happy to do it. Donating blood helps so many people and it’s easy as pie.  You lie down, feel a little pinch, and before you know it, they’re handing you juice and cookies.  I had donated a few times in the past so I wasn’t nervous as I rode the elevator down to where the drive was.  They called my name and I was brought to a nurse who tested a small sample of my blood. 

“I’m sorry but you can’t donate today.”  She said my hemoglobin level was below the acceptable level and she couldn’t​ allow me to donate.  There goes my good deed.  They advised I see a doctor instead.  I took it as a fluke and thought perhaps I need to eat a steak.  After a few months I made an appointment for a physical and mentioned to my doctor what happened when I tried to donate blood. He ordered a full blood work up.  Call it the arrogance of youth but I really didn't think anything negative would be discovered from that blood work.  I went about my life working hard and playing hard like a twenty-two-year-old should.  I felt good and healthy.  When my doctor called with the results I learned that my cholesterol was excellent but that not only were my red blood cells below normal but my white blood cells were also.  My doctor referred me to a hematologist.  I guess the steak didn’t work.

I met with the hematologist and he ordered a litany of tests for which they drew what seemed like a tremendous amount of blood.  He also said a bone marrow biopsy was a possibility but we would see what my blood tells us first.  That sounded scary so I was hoping my blood had a good story to tell.  Unfortunately, after a couple more visits, a few more tests and a lot more little vials of my blood, the doctor was still stumped.   He said there was one test we hadn't done yet and he really didn't think it was the problem but he couldn't rule it out.  It was the AIDS test.  There are few things that could scare a twenty-two-year-old more than​ being told by a hematologist that you need to take an AIDS test.  So many things were going through my mind but the main thing was that until I got any results, I didn't want anyone to know.  I knew the worry would all but paralyze my mother and I didn’t want my father hunting any old boyfriends down with a shotgun.  I was in complete emotional turmoil and I have a terrible poker face. 

My doctor said it could take at least a week to get results back.  I am an open book.  I don’t lie because I am awful at it. How was I going to walk around for a week with this secret?  Ironically, my doctor saved me with, “I also want to perform a bone marrow biopsy today.”  The test and the biopsy were his last-ditch efforts to come up with a diagnosis and the biopsy would also be my excuse for why I wasn’t in the best mood.

The biopsy was rather painful.  I was instructed to lay on my stomach with my pants pulled low.  They took the sample from my left lower back.  They numb you little by little going deeper and deeper till they hit bone.  I remember a terrible burning sensation every time he went deeper.  Then when he went to extract the marrow, I couldn't see what he was doing but it felt like a long metal rod was being stuck into my back and then ...the pulling.  The pulling was gross.  It was also very uncomfortable but mostly just the knowledge of what he was doing was disgusting.  The whole experience was painful and taxing, emotionally, mentally, and physically but it did help to take my mind off that dreaded acronym that I never thought would be associated with me. 

My mother wanted me to stop by the bank where she worked after my appointment and as soon as she saw me she knew he performed the biopsy.  I was walking with a bit of a limp.  Thankfully she assumed the angst I was radiating came from the biopsy and nothing else.

That night I slept at my boyfriend's apartment.  My discomfort from the biopsy was a good excuse for not “being in the mood” but meanwhile, I was thinking sex with me could be a death sentence for him.  I had a strong gut belief that the test would come back negative and I didn't think spreading my anxiety around was fair but what if my gut was wrong?   What have I done?

Somehow I fell asleep that night.  While I slept I had a vivid dream about my Grandma.  She had passed away six years prior but when the dream woke me, I swore I could feel her presence.  It was such a strong feeling that immediately calmed me and made me believe that everything was going to be okay.  I knew then that I had an angel on my side.

The next morning my boyfriend and I had a plane to catch.  A friend of mine from college was getting married in Florida and we were going for the weekend.  I wouldn't consider not going.  I wouldn't do that to my friend and it was a welcome distraction.  We ended up having a great weekend and it was back to work on Monday.  I threw myself into my work and tried not to think about test results, my blood, or anything else that wasn’t under my control.  For the most part I succeeded but I had an hour train ride to and from work.  Too much time to think.  I tried to get a window seat so that when the tears came I could hide my face. 

On Wednesday I was in my cubicle going cross-eyed analyzing sales figures when my doctor called.  He had great news.  The AIDS test came back negative!  He said he had never seen results come back so fast. I sent a thank you prayer to heaven knowing that my Grandma, my angel, had been hard at work.  The relief was immense.  To me, AIDS was the worst diagnosis I could imagine and thank God I was able to rule out the worst.  Eventually the results of the biopsy came back and still my doctor was at a loss so he referred me to a second opinion.

My mother and I met with the second opinion and he again ordered numerous tests but his confidence that he would be able to confirm a diagnosis was reassuring.  He tested me for several scary and unfortunate conditions.  He also did another bone marrow biopsy which was better than the first one simply because I knew what to expect.  Sometimes the unknown is scarier than reality which is what I was hoping about my mysterious condition.  Not having a diagnosis was wearing on both me and my loved ones. 

I was starting to feel more tired.  More like the anemic person that I was.  I don’t know how much of that was truly symptomatic or psychosomatic.  I wondered constantly what it could be.  Would I need a bone marrow transplant?  Will I be able to carry children?  Am I going to die?  The waiting for test results was exhausting.  I didn’t run any marathons while I waited.  I didn’t climb any mountains but I might as well have considering how tired and worn out I felt since my brain wouldn’t relax.  I turned to Google for information but it came up with some pretty terrifying possibilities so I learned fast to not go there.  We just had to have patience, faith, and hope that everything would be ok.

Then finally!  After all the test results were in and my bone marrow sample had been analyzed, my doctor had a diagnosis.  Aplastic anemia. Simply put, my bone marrow is sluggish and doesn’t produce red and white blood cells and platelets at a normal rate leaving me with less than what is considered the healthy norm.  Depending on the seriousness of the deficiency, this results in fatigue, dizziness, shortness of breath, a compromised immune system, problems with clotting blood and numerous other things that I would rather not think about.  I felt relief at hearing a diagnosis but then my mind followed up with the giant question, “am I going to die”?  The doctor’s response was, “not from this”. 

People do in fact die from aplastic anemia and other bone marrow disorders but he didn't believe my case was that serious.  He wanted to see me every few months to test my blood and see how my levels were behaving.  There were medications available that could boost my red blood cell count to help with my fatigue.  Will I need a bone marrow transplant? He didn’t believe so but wouldn’t rule it out.  Will I be able to carry children?  “Yes, you’re going to live a long life and have as many children as you want”.  I can still picture his smiling face full of confidence as he told me that.  It felt as if a hundred-pound weight had been removed from my chest. 

And he was right.  Eighteen years and three kids later I’m still here.  No bone marrow transplant and I only used medication for a short time.  My pregnancies were a bit tricky with my red blood cell counts dropping rather low; which greatly concerned my obstetrician but they never got to the point where I needed a blood transfusion.  After I had my third child, I think my obstetrician was never so happy to tie someone’s tubes as he was about mine.  I was concerned that my anemia would carry over to my children but I was assured that there isn’t a genetic component to my condition.  Something I came in contact with at some point in my life changed how my body creates cells.  Perhaps a virus I had or a medication I took.  We’ll never know the cause.

Though my anemia is not considered life-threatening, it still has a presence in my life.  I’m reminded whenever a wave of dizziness hits or when I’m at the gym and get winded quicker than usual.  Or when I get tipsy after one drink or when my children’s school holds a blood drive and I’m not able to donate.  My biggest worry which I work very hard to suppress is that if I was to get cancer or some other horrible disease, would I be able to beat it?  Is my anemia already such a strike against me that I wouldn’t have what it takes to beat something much worse? Such thoughts lead to very dark places that aren’t helpful to anyone and so I bury them deep.  I focus on my three, beautiful children, my wonderful husband, and keeping myself healthy.  For them and for me.

 

 

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