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Old Tue Jun 28, 2016, 11:57 AM
KatailS KatailS is offline
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Join Date: Apr 2016
Location: Avon, CT
Posts: 41
The Journey Ahead

Hi All
My story is in the early stages and not too sure which path I will be facing. It all began 19 months ago when I went for my annual checkup. Routine blood work was ordered a week in advance of my appointment. I was shocked to get a call from my doctor the very same afternoon asking if I was okay and telling me to go the next morning to a different lab to repeat the tests. I did and got another call saying my numbers were lower. One thing led to another, and another, and another.... and to briefly summarize, I was diagnosed with an unexplained pancytopenia. I am tested every 3 months and my numbers fluctuate a bit.... but they remain below 'normal'.
RBC 2.87-3.33
WBC 2.1-4.5 (keeping in mind the high number was when I was sick)
Neutrophils (absolute) .76-2.64
Lymphocytes (absolute) .906-1.6
Platelets 68-104
Hematocrit 32.1-35%
Hemoglobin 10.4-12
MCV 105-112
MCH 34.8-36.5

With those numbers out of whack, several numbers remain primarily normal
MCHC 32.3-33.4
Reticulocyte (absolute) 38.7-45
LDH 144-181
Haptoglobin 104-123
RDW 12.5-14.9
MPV 7.6-10.5
Ferritin 38-51
Billirubin 1.0-1.3
Sodium 142-147
I have been tested for many of the obvious things to rule out other conditions including ANA, Hepatitis, IgA, IgG, IgM, iron, copper, vit d, serum folate, calcium, TSH.....

My first BMB 3/2015) revealed "variably cellular marrow with trilineage hematopoiesis and megaloblastic erythroid maturation. No infiltrates, fibrosis or lymphoid aggregates seen"
"Flow cytometric prolife of the marrow is within expected parameters and without increase of blasts or evidence of B-lymphoid or plasma cell clonality... however the peripheral blood demonstrates a small PNH clone" (0.13% erythrocytes and 0.13% granulocytes)
Fewer than 1% blasts, 46% myeloid elements, 24% erythroid elements, iron stores markedly decreased to absent, ring sideroblasts not identified
Note, "there (were) no overtly dysplastic morphological features"

No official diagnosis has been made and I have been in the watch and wait mode since. Hematologist put me on iron, vit d, vit b12 and told me no alcohol. This has been hard as I really loved my wine.... and everyone around a me continues to drink it which makes me miss it more.

I recently had a second BMB (14 months after the first) and the results read, "hypocellular marrow with trilineage hematopoiesis.... focal non-specific lymphoid aggregate". The comment goes on to read, "compared to the previous studies which showed areas of hypocellularity but overall appropriate cellular its for age of patient, the current studies shows overall reduced cellularity (10-40%)

A CBC morphology test showed 1+ tear-drop cells and 1+ ovalocytes. Cytogenetic testing results were "normal female karyotype"

*sigh*
I am scheduled to be seen at Dana Farber in a few weeks and am quite nervous. I try to stay positive.... and this forum has helped me tremendously as I felt very 'alone' until I found you all. I try to learn from your experiences.... and am trying to appreciate each day.
A question..... how do you answer the question, "How are you?"
I feel like I need to lie and say that I am fine.... just to make everyone else feel comfortable. I honestly don't know how I am. I feel 'off' but I don't feel like I can really explain to people why .... even the doctors don't know what is wrong. I don't like feeling like a hypochondriac and I try to keep up with everything I used to do, but it is hard (some days harder than others). My spouse is not as supportive as I need him to be (drove me home from my BMB and dropped me off to spend the next two days on the golf course). He tells family and friends that I am fine because that is what he wants to believe.... and goes on as if nothing is wrong. Is this something I can face on my own?
Thank you for reading my story..... and I hope to find someone here who understands ....
__________________
Kathie - 54 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone (now increasing), monitor bloodwork every three months
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