When my hemoglobin (hgb) and hematocrit (hct) was not stabilized with Hydrea last summer, I needed a couple of phlebotomies to get me back in the zone. Since last fall, these counts have slowly but steadily fallen.
Now, with Hgb at 8.2 and Hct at 27.4, I can't walk up the stairs without my heart pounding. I get light-headed and dizzy when I walk or stand for much time around the house. (You know something is not right when you find yourself looking for things to lean against as you move around. Similar to when I was pregnant and had to scope out the nearest restrooms)
One of the great take-aways from the Joyce Niblack MPN Patient Conference held in Arizona this month was encouragement from experts like Susan LeClair, PhD and Ruben Mesa, MD that blood counts and ranges are not absolutes for every patient. We are encouraged to pay attention to our individual symptoms and let our doctors know.
This gave me the confidence to let my local hematologist know that I need a blood transfusion now (with at Hgb of 8.2) -- I don't want to wait for it to reach 8.0 (the standard accepted level to begin transfusions). I've been very fatigued with it in the 9's for the last few weeks; when it fell lower this week, I had to cry "uncle."
Additionally, I plan to start taking Jakafi when it's approved by my insurance. Since blood counts often drop during the first few weeks, I want to start from a position of strength.
So yesterday I went to the hospital's outpatient infusion center to get my blood typed and cross-matched. Here is a good explanation of the blood transfusion process.
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| My "energy pack" |
As I sit here and write this while someone's generous gift is flowing into my veins, I feel quite humble. Someone took time (and energy) from his/her daily routine to help a stranger. It is an unconditional gift. No questions or judgments about my race, religion, age, gender, political views, sexual orientation, family situation, employment status, or the reason I need the blood. A pure gift of care and concern for others.
One of the nurses explained that this donor helped me with the red cells, and another with the white cells, and a third person with the platelets. How is that for leveraging a donation? My mom was an ICU nurse while I was growing up and we learned how important blood donation is to saving lives. I started donating blood when I was 18 and in college. Because "B negative" is not a common blood type, the blood bank would sometimes call me in. I continued donating until my early 30's and quit due to chronic anemia. Later, in my 40's, I became symptomatic and diagnosed with Polycythemia Vera. I've been assured that my blood was good and safe for donation in my early years; the JAK2 mutation that triggered the PV occurred later.
I have no idea how much blood I donated in my healthy years. But I'm sure it not enough to cover the blood I will be receiving over the coming months. Some have told me that they would like to donate to someone they know. I remind them that should they ever need blood (due to illness or accident), the donor who saves them will likely be someone unknown to them.
Blood donation is the ultimate random act of kindness. I receive this gift of kindness and life with love and gratitude. It is yet another reminder of the interdependent web of life.
