Hello, everyone! I've been perusing the boards and see that you guys are pretty helpful; nice to see. I did a quick search for this through the MPN Voice forums and only found a similar expectant mom thread for someone who had ET, not PV. Also, I was curious if anyone else has a weird platelet family history.
I know my polycythemia can't be tracked back to 2004, as I had a CBC done before a ligament surgery on my ankle that came back totally normal. It may be traceable back to 2010; surprise gallbladder surgery's CBC came back with a platelet count definitely over the high side of normal, but not so far over that the hospital required additional testing. I’ve yet to be able to get their records department to send me my file. (Never had someone so hard to get hold of on the phone! D: )
I'm 31 as of this past August, the same month I had my initial OB appointment for our first child and was diagnosed with PV via JAK2 testing. Hell of a busy month, right? Quite the mixed bag – yay, baby; boo, blood cancer.
My OB was worried when my RBCs, WBCs, platelets, and hematocrit were all elevated in her routine testing, and she was right to send me to the hematologist. The initial draw in early August had a hematocrit of 51%, platelets at 408 x10E3/uL. Following draws have seen it brought down to 48.2% HCT and 412 x10E3/uL platelets in late August, 37.1% HCT and 491 x 10^3/uL platelets in October, and 33.2% HCT and 438 x 10^3/uL platelets in November.
The platelet numbers have been a bit all over the board, but nothing too far gone to require more than the advised 81 mg baby aspirin a day, daily exercise, and monthly blood draw for testing. Even though the HCT level has dipped below the low-average of 37%, my hematologist isn't worried. As he's explained, I have a double-whammy right now: the aspirin and monthly blood draws are keeping the level low, but also my body is creating more hemoglobin than usual. I can rely on that for right now to help keep those numbers under control, but we won't be able to truly tell my numbers until a few months after birth, when my body is no longer making that extra fluid.
The plan is to stick with the aspirin/exercise/monthly phlebotomy until the baby's almost due, then to switch from aspirin to either heparin or interferon-alpha for the last week or two before delivery. After delivery, he'll let me stick with something that won't affect the baby via breastmilk. He wants to see what my numbers level out to in about six months to a year so we know what they truly are. A year to a year and a half from delivery, he wants a bone marrow biopsy, though I'm still unsure why. We've confirmed via genetic testing that I do have the JAK2 V617F mutation. My husband and I were wanting to have a second child a year or two after the first, if approved by our health professionals, but this biopsy seems like overkill. (That could also be my serious fear of needles talking. UGH.)
So for this bit, a few questions for you all –
1)Anyone else here been through a pregnancy with PV? Does this sound like the approximate plan they had you on? Is there anything he and my OB have left out that I should be warned of that you experienced?
2)My hematocrit levels… They’re low now. It’s overall probably a good thing, as women are more likely to experience blood clots while pregnant anyway even without PV. Does his bit about the hemoglobin sound about right to y’all?
3)Anyone care to venture a guess why he’s so gung-ho about ordering a bone marrow biopsy if we already know it’s PV with the confirmed JAK2 mutation? There are currently no big flashing warning signs I know of that it’s evolved into MF or leukemia; is this just routine at this point?
To make this a more interesting medical adventure, I’m the family oddball. I mean of course it’s abnormal for a girl my age to be diagnosed with PV to begin with, but I mean I’m the polar opposite of the rest of my family on my mom’s side.
No hematologist has managed to put their finger on the pulse of what’s weird about my mom’s side of the family. They know *that* their numbers are low, but not *why* they’re low. My mom’s mom, my mom, two of mom’s three brothers, and one of those brother’s daughters all have low platelets. Mom’s hematologist told her that she has an average of 90 x 10^3/uL. Unlike regular platelets, hers have been shown to live only an average of a day, day and a half. Average platelets live just over a week. So technically she’s overproducing platelets, but those platelets have a severely limited life span. However, they act completely like normal while alive and function just like they’re supposed to, minus the dying early.
My uncles’ numbers stay steady, but the women’s numbers don’t. When pregnant with my sister and me, Mom’s platelet count dipped to about 60 x 10^3/uL. My female cousin’s numbers dropped almost as much when she was pregnant. Mom and her mom both experienced a dip in numbers, though not as bad of one, when going through menopause. Her mother’s spleen had to be removed near the end of her life because it began killing off her already under-represented healthy platelets, but none of the others have run into this issue.
So… definitely the oddball in this family. They have too few for an unknown reason, and I have an overload for a known reason.
4)Does anyone else here have a family history of platelet weirdness? Our genetic counselor (through our OB’s office) said that if there was any familial influence on my PV, it would most likely have come through this side with the multi-generational blood cell issues. While there’s no one else with PV in my family we know of, she believes it feels too coincidental.
5)And I know it’s the opposite direction of our collective issues, but does this sound familiar to anyone? Has your research into MPNs ever introduced you to another disease that acts this way?
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