I don’t have the problems you do, but…here’s what’s happening. I’d been dragging my tail around for awhile, but my doc thought it was just my meds. I’m a 4-year breast cancer survivor, and have had multiple surgeries/procedures over the last 4 years to the point of finally acquiesing to disability. Kidney surgery, ovarian, hernia, and so on. Too numerous to count. Let’s just say I’ve had more surgeries in 4 years than the last 50.
At any rate, most of what relates to this began in Sept., 2004. I was hospitalized with a severe septicemia, which was cleared up in 2 weeks, discharged, a week later, spiked temp and ended up in hospital again – again with pneumonia, but neg. blood culture (thank god!). However, within a few short days, my blood counts bottomed, and I had to be transfused. Note that over the last 50 years, I’ve had infections that have almost killed me, and with those, multiple different kinds of antibiotics, and never once had to be transfused. Things went so well after Oct., that I went out of town for t’giving, only to spike fever day after, and end up in hospital for pneumonia – again – and severe anemia. I came within a few tenths of a point of getting transfused, but got home ok a week later. Two days before christmas, spike temp and started vomiting. Given that was the sign of sepsis back in Sept, I nearly panicked, but when I got to ER, they admitted me under IV antibiotics – again – with pneumonia – again but thankfully – again, neg. blood cultures! However, once again, my counts bottomed, and I was transfused on Christmas day. It’s now January 26, and so far…
My doctor basically said that as my counts drop, even just hgb, I become sick (immune system crashes), and the need for blood is greater, I can’t produce it, and my counts bottom to the point of transfusion. This was confirmed by a bone marrow biopsy that showed severe hypocelluarity of the marrow. Normal is 40-50% Mine is 15-20%. We are still awaiting a flow cytometry and genetic tests to see what might show. Just as I did when I found breast cancer, I started doing research on the net. Unfortunately, it seems that I don’t really fit in any ‘category’ I can find. I asked about aplastic anemia, and my doc said “no, A means none, and you have cells in your marrow” but the more research I did, the more I discovered there are several ‘stages’ for want of a better term of Aplastic anemia – from less than 30% cellularity to none or very, very little. It also states that it can be in any one or all three of the cell lines (wbc, rbc and/or platelets). Ditto with myelodysplastic syndrome – but…the question I have is this. Can myelodysplastic syndrome only pertain to less cellularity AND deformed cells morphologically, or…can it pertain JUST to lowered cellularity of the bone marrow, with the cells normal morphologically? That’s what I can’t seem to figure out – most of what I read is rather vague, but…one or two articles have said either/or, and a few articles have stated that it can be 1, 2 OR 3 cell lines, so for example, if my RBC’s only drop, it doesn’t matter.
What’s happening with me, is this. My HGB drops (iron and folate are normal, as of last test) – it was 12 on 12/26 and is 10 on 1/24 – last test on 24th showed that other cell lines were fine – and I get sick. My suspicion is that even if my WBC’s don’t drop as dramatically, the debilitation caused by the RBC’s dropping sends my immune system out of whack due to the weakness and less resistance…I catch something – usually pneumonia due to smoking for many years (quit 18 months ago, but damage is done with moderate COPD), and the demand for cells isn’t met, and they bottom out, and transfusion perks me up. Seems that every other month, I need transfusions, sometimes 1 unit, sometimes 2 units, doesn’t seem to matter – both last about as long. I’m on oxygen 24/7 probably due to both low cell counts (hgb) and copd. Attempt to take me off o2 at hospital for a few moments ended up in my o2 level going from 99 to 90 immediately, so I was put back on.
Does this sound like MDS, or variations? Could it be aplastic anemia? Granted, when the flow cytometry and genetic tests come in, we might have a name for it but I won’t find this out until the 31st – my doc had to sit jury of all things, this week! . I’d appreciate any comments. Sorry for the LOOOONG post, but…I had some good examples here to follow.
