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Old Sat Aug 4, 2012, 09:01 AM
David M David M is offline
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Join Date: Sep 2009
Location: Fayetteville, TN
Posts: 89
Pancytopenia Update (Aug 2012)

Well, I haven't posted in a while, so I thought I'd give a quick update of the status of my pancytopenia / AA / whatever. Things are basically the same with me. Platelets have slowly dropped to the low 30K range (at least in the last 3 CBCs over ~3-4 months). HGB is generally ~10. RBC is around 2.8, and WBC is also in that same area.

I am still feeling good, with good energy (able to exercise quite a bit). I have not been bruising abnormally, have not been bleeding, and I have not been getting frequent infections. So, although overall, things counts-wise have gotten a tad worse in the last year, things seem to be going pretty good otherwise. I am taking only iron, Vitamin D, Vitamin B-complex supplements. So at this point, I have not had any real "treatment" or transfusions -- we are still in the "watch and wait" mode... which is fine with me.

I realize that this pancytopenia problem is something that I can't control, but there are some things I can do that I think may be helpful. For example:
(1) I am trying to drink more water than ever. Water is so important to our bodies, and especially to our blood production -- and most of us do not get nearly enough water. So, drinking more water is something easy I can do that will not hurt me!
(2) I am trying to get in as good of shape as I can by exercising -- vigorously and often! I know many of us do not feel like doing much exercise... low HGB will certainly make this difficult at times. But I was told "you can do as much as you feel like doing" -- so, I am pushing myself to do what I can. I have surprised myself in what I can still do! My endurance seems to be less, and I feel more wiped out at times than I should -- but overall, exercise seems to be helpful.
(3) I have tried to have a positive attitude about this whole thing. I have learned to enjoy each precious day of life, since I know this all can change very quickly! My pancytopenia problem has been going on now for over 12 years -- and it doesn't show any signs of going away in my case! If nothing else, I have learned some patience as I am participating in this "slow motion train wreck." Going around moping and complaining is not helpful to myself or to anyone. I've tried to be thankful, instead of griping. Attitude is something that we CAN control. (There is much more I could say here about having a positive attitude, and I would be happy to discuss it with any of you.)
(4) Although I do not go around complaining about my lot in life, I have developed a support network of people who care about my condition. I have asked them to pray for me, and I keep them posted periodically on my condition. This has also helped greatly with my peace of mind.
(5) I have tried to stay informed by monitoring (and occasionally posting to) MarrowForums and reading other related sources. Denying reality is not helpful. The fact is -- I have a rare bone marrow failure problem. It is helpful to be armed with as much information as is reasonably possible as I face the future.

Well, these are some things that I have done that have been helpful. I am still curious about others out there who have had this form of slow (or very slow) moving pancytopenia. I'd love to hear your stories!
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David M, reds/whites/plats slowly declining since 2000; hypo-cellular bone marrow; diagnosed Mild AA; low counts, but stable since 2009; watch and wait -- no treatments required to this point.
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