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Old Sat Aug 11, 2018, 12:17 AM
KatailS KatailS is offline
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Join Date: Apr 2016
Location: Avon, CT
Posts: 41
Quote:
Originally Posted by Hopeful View Post
Hi Kathie,

I am glad to read that your high PNH reading may have been from a erroneous lab test and that you are staying stable.

Are your monocytes lower now as well? The high MCV is still concerning to me. 6 months is a long time to wait to confirm that things are indeed trending stable or up.

If it were me, I'd would want to recheck my CBC in 3 months. The test is cheap (relatively), and seeing stable or rising counts would be affirming.

Please don't take this as being discouraging. I am just saying what I would do!

I hope you continue to do well!
Hi Hopeful
I honestly don’t know what to think.... the doctor never said she felt the last test was erroneous. I asked if the PNH clone could rise and fall like that and the doctor felt as if it could. So that is that. To say I am comfortable with the doctor’s opinion to wait 6 months would be a lie.... but she is the one calling the shots. I will say that if I feel at all ‘off’ during the six months I will call my regular doctor and ask for a CBC. Going to stay positive about it and go about my life. I am blessed to have the numbers I have and won’t let myself worry about it. If my friends, family and hematologist aren’t concerned then I will try not to be.
Thanks so much for your kind thoughts.... wishing you well
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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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