[leeslay]

I was diagnosed with AA, MDS and PNH in March of 2009. I have had to get probably about 12-15 red blood transfusions. Everytime I was set up for one I heard "we just need to be careful about iron overload". But the whole time they never checked my levels so they never knew. It wasn't until I finally asked what my levels actually were that they told me they never checked. So when they finally did my levels were over 1800 and now I need to get on Exjade right away. Well that takes about 3-4 weeks to get on so now I'm on 11 tablets. Well in the meantime the Dr. office was supposed to sign one little form and fax it over to the Exjade company so I can continue the medication, but when I called to get the refill low and behold the Dr. office "forgot" to so now I have to wait again.

So I went in Monday and had to tell them what levels to check and see what needs to be done.

Can't wait to be well enough to drive up to Denver!!! Then maybe I'll be able to trust my Dr to pull the right tests when they need to be pulled.