May I Borrow A Cup of Time for my Aplastic Anemia?

I have to admit I’ve been pretty lucky in my misfortune.  Since I was discharged from my extensive hospital stay nearly three months ago, my health has been very stable, and my weakened immune system has been working its metaphorical ass off to effectively fight the germs with which it comes in contact.  However, I am very aware that in regards to sickness and infection, I am living on borrowed time these days.  I know the most minor of illnesses (cold, flu, infections) could result in a trip to the hospital.

Aplastic Anemia Blog - Cup

The familiar little cup

Two weeks ago, I began to experience mild pain and burning with urination.  The discomfort continued on the ride to my regularly scheduled doctor’s visit, and I suspected I was developing a urinary tract infection.  I mentioned the burning to my doctor and asked that I be given a urinalysis.  When the results came back, they were inconclusive.  The nurse suggested that perhaps it was irritation in my urethra due to a new soap.  The sample was sent away for cultures to double-check the results, and I was told to keep an eye on it.

The good news at my appointment was that my platelets were at 38,000 – the highest they’ve ever been at four days after a transfusion, and my hemoglobin was actually a tenth higher than it had been at my last CBC.  I was very excited to get the hemoglobin and platelet reading, and I began to hope that perhaps the trend would continue.

Despite the positive CBC results, the pain with urination continued.  I called the hospital each day to see if my cultures were back, but there was still no indication of infection.  By my Thursday appointment, I developed moderate pain in my abdominal area.  I had another urinalysis and this time it showed signs of mild infection, along with hemoglobin in my urine.  I was prescribed a course of oral antibiotics.  What was really interesting/horrifying was a drastic change in my CBC numbers.  My hemoglobin dropped a point and a half and my platelets tanked into the teens.  My whites, on the other hand jumped up by four tenths to 1.2 – the highest they’ve ever been.  Clearly, my weakened immune system was trying to rally the troops to fight the infection.  I received a unit of platelets, but refused blood, as I wanted to wait and see if the numbers would recover after beginning the course of antibiotics.

What I didn’t count on, despite taking the first antibiotic pill, was that the infection had already escalated and moved into my bladder.  The abdominal pain worsened, and despite Tylenol and hot packs, there was no relief.  Moaning and doubled over, my boyfriend/hero and I made the decision to take me to the hospital.

We went to the 24-hour long infusion area, which is where I’ve been instructed to go in the past when I’ve experienced fever and flu-like symptoms.  However, due to my intense pain, the nurses were ordered by the on-call doctor to send me to the emergency room.  I had never been to the ER before, and was nervous after hearing horror stories of patients waiting for hours to be admitted, all the while writhing in pain until their spleens exploded.  Fortunately, Cedars-Sinai Hospital is run a lot more smoothly.  I was quickly seen by a nurse, and not too long after by a doctor.

Aplastic Anemia Blog - Clooney

Sadly, this was not my ER doctor.

The ER doctor gave me a CBC and yet another urinalysis (I am now an expert at peeing into little cups).  This time the results were different.  Not only did I test “off the charts” for infection, but the majority of my sample was blood.  There’s nothing like being in terrible pain, frightened, and peeing blood.  Also, my CBC levels had dropped once again.  My hemoglobin lost half a point since my test earlier that day.

I received IV antibiotics and a nice dose of narcotics for the pain.  Once the aching was under control and the antibiotics were coursing through my veins, I felt much, much better.  However, due to my Aplastic Anemia, I was admitted to the hospital so I could be observed and continue to receive the super strong antibiotics intravenously.  I also received a much-needed blood transfusion.  Thankfully, the infection got under control quickly and once I was stable again, I was discharged.  Unlike my other hospital stays, this one was of short duration – a day and a half.

My ten-day course of antibiotics just finished today, and I hope I will not need another.  My doctor and I agreed that next time I experience urinary tract infection symptoms, he will proactively put me on antibiotics, just to be on the safe side.  Hopefully, infections will not be allowed to spiral out of control again.

I try not to let the uncertainty of my disease rule my life, but I do have deep-seated fears that my weak immune system will someday:  allow cancer to form and spread, let in a virus that modern medicine can’t defeat, or be unable to combat an infection which results in sepsis.  My worries are very real, but I try not to focus on them too much, as they are all possibilities I cannot control beyond practicing basic good hygiene and self-discipline.  Letting go of my need to control my situation is one of the hardest lessons I am learning from my Aplastic Anemia.  I also am trying to accept that while there may be more trips to the hospital in my future, it’s better for me not to worry about what’s yet to come, and focus on today.  And today I feel good.

————————————————————————————————-

MY BLOOD VALUES
AS OF 6/23/2011

Blood Value My Number Normal Range
WBC 1.0 4-11
RBC 2.29 3.67-5.11
Platelet 11,000* 150,000-450,000
Hemoglobin 7.2 11.6-15.4
Polys 57% 50%-62%
Lymphs 32% 25%-40%
ABS Polys 0.6 1.8-8.0
ABS Lymphs 0.3 1.0-4.5

* Received one unit of platelets due to this value

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