hi I’m on a watch and wait for hypoplastic Myelodysplastic syndrome (MDS) with a small pnh clone.
i have been anaemic and neutropenic for a few years now, also slightly low platelets from time too time.
i find it frustrating some times as because my haemoglobin is only slightly down between 12-13 so my consultant says its near normal, but my rbc hasn’t been above 3.7 for years (mine ranges between 3.2-3.7) as a keen cyclist it feels anything but slight on the flat its not to bad but on hills my heart rate goes through the roof.
i have now resorted to an e-bike but now no longer go on group rides as i got fed up with the looks and really don’t feel like explaining why the ebike.
so why do they always concentrate on haemoglobin when i have roughly 25% less red cells
and you can have all the haemoglobin in the world but with out the red cells too carry it its pointless.
many thanks chris
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