Hematomachrosis

[Debbs73]

Hi all. Just thought I'd give you an update on what's happening with my hematomachrosis. I'm still having fortnightly blood taken. It seems that 400mls is the regular amount that there taking. A few weeks ago my blood count had gone down from the 900 to the 700's, then gone down again and again ,then a month ago it had gone back up to the 800's then the results from 2 weeks ago that I got on Friday just gone was back upto the 900's. But my nurse just reassured me that this is very common for this to Happen and not to worry about it. At this rate is going to take forever to get down to 50 which is what I should be😕. My arms are being to look like pin cushions. I'll keep you updated when I get my results and go for my next lot of blood taken in a fortnight.

Takecare y'all. Debbs😃

[ITYFIALMCTT]

I hope this all starts to make a big difference for you soon A friend was diagnosed some time last year and it's taken a while for him to improve with the therapeutic bloodletting but he's getting there.

[Debbs73 in reply to ITYFIALMCTT]

Yeah it will get down eventually, well it would if it didn't keep going up after its gobe down. But like vicky my nurse said it's normal for it to go up and down like this. 😃

[JennSp in reply to ITYFIALMCTT]

GOD! this all sounds like something out of the Medical Past 'Blood letting' I feel for you all, with all my aches and pains, and health conditions, don't think I would like this one....even tho I don't have a phobia of needles I bet I soon would have....Hang in there all of you in this predicament.

[Madlegs1]

That must be very disappointing for you.

I find I get the best information about iron from the Iron Disorders Institute (Google it ))

It is very knowledgeable but extremely awkward to use- it's all done by email and difficult to follow one thread.

Makes one appreciate HU.

There is a Hemo site here as well- but noone visits there - so not much use.

Now- if I could just get the Iron Disorders group to take on the HU site- that would be perfect.😈

[Bananas5]

XXX

[Madlegs1 in reply to Bananas5]

I think I'm getting a few people interested. Fingers crossed.