Science is not Perfect - Ashley, caregiver to someone with ET

Ashley Essential Thromobocythemia (ET)

My name is Ashley, and I’m writing to you today to encourage you to speak up when you feel uncertain or unsatisfied with the answers you are getting from your healthcare team.  It is your right to seek a second opinion.  In our case, we sought a third opinion in a fourteen-month period. 

I have found it to be very difficult at times in life to discern intuition from anxiety.  When my husband’s essential thrombocythemia began to change after staying relatively the same for about twenty years, I found myself in this predicament.  In December of 2016 I got a call from my husband Ray’s co-worker saying that he had gotten pale, sweaty and lightheaded and that I needed to come and get him.  Ray was working as a bedside nurse in the emergency room.  His blood count showed a drop from his average platelet count of 500,000 – 800,000 with Anagrelide to 96,000 with an alert high immature granulocyte count.  We were very concerned at that time for the progression to myelofibrosis. 

Our regular hematologist was out for health reasons, so we saw a new provider in his place.  We got the impression that he was not as concerned, and it just didn’t set right. To be fair, there is a degree here of our perception of the situation that isn’t exactly scientific.  Maybe he was concerned but didn’t communicate it or we didn’t receive it.  We are so deeply vested in the health of our loved ones.  All that concern and love can surely affect objectivity.   None the less, we decided to check out other options. 

For the next year, we saw a different hematologist in a nearby county.  He seemed to confirm the previous doctor’s sentiments that this was not a cause for concerns.  We decided that two out of two specialists surely couldn’t be wrong, so we got labs checked and kept our appointments with Doctor #2. 

In the meantime, I decided to go back to school for my Bachelor’s Degree in Nursing.  With Ray not feeling well and us with four children to support it seemed like the practical thing to do.  During this program I was required to perform and video a physical assessment.  Ray was my patient of choice.  At this point it is November of 2017.  On palpation of his abdomen I noted that I could clearly feel his spleen that was distended and rigid.  Before our next follow-up for me to report, he had a terrible bout of abdominal pain that required a CT.  Had we not known his spleen was somewhat enlarged I’m not entirely sure we would have rushed him in like we did so we are very thankful for this finding. The CT revealed splenomegaly (approximately 22cm). He had recently been short of air with exertion but had contributed it to weight gain.  It was starting to make sense.  This big spleen had been pressing on his diaphragm.    His blood cell count at that time was being held until a pathologist was able to review it because it was so off kilter.

With Myeloproliferative Neoplasms being so rare, no one was quite sure what to do with him in the ER that night so the next day we drove to see Doctor #2 with a hard copy of the CT in hand.   We weremore concerned than ever.  Doctor #2 again reassured us this was within the disease process and there was no cause for concern.  This really highlights a moment of conflict for us.  We wanted more than anything to believe he was absolutely right, that this was not indicative of a worsening disease process. 

At this moment in our story, God presented some of his tender mercies.  Because I was a student, I had access to the school library and had recently taken a class on research.  I found an article from a peer-reviewed medical journal that covered all of the symptoms he had dismissed and attached it in a message in his electronic health record to Doctor #2 along with [M1] [M2] a note stating very politely and professionally my concerns for progression.  I felt sure this was concrete evidence and that now his symptoms would surely get a second glance.  Later that afternoon, Doctor #2 called Ray…and told him to tell me to stop worrying.  We felt so defeated. 

That same week while discussing the problem with my co-workers at lunch I discovered that lady I’ve worked with for years had a sister with myelofibrosis secondary to polycythemia vera.  I’m sure my mouth was agape.  She proceeded to tell me about her sister’s hematologist who was about two hours away from us.  This was no coincidence.  Just like the physical exam, the access to a university library and a random lunch with a co-worker who happened to have an elaborate knowledge of this rare disease process are all God’s way of proving to us He is bigger than our circumstance.  He was opening doors for us to get to appropriate treatment before we knew that we needed it. 

The following week, then February2018, we had a referral from out family MD and an appointment with Hematologist/Oncologist #3.  One week after that, Ray had a bone marrow biopsy, then the results of myelofibrosis.  While we are obviously not happy about the results we are very thankful to have an appropriate diagnosis and a plan.

I would just like to take this experience and share it with others as a reminder that science isn’t perfect, God’s love for us is.  Doctor’s and patients are also imperfect because regardless of education or experience we are all human.  Neither Doctor’s or patients are going to get it right 100% of the time.  So move forward with a functional type of grace for one another.  Don’t be afraid to get that second or third opinion.  Watch for signs along the way that could be God’s mercies in disguise. Click here for a few ways to search for a second opinion from an MPN specialist if that is right for you

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These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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Essential Thromobocythemia (ET) , Age: N/A
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David Packman
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