Hi

[aussie danielle]

hello everyone, lots has happened since i was last here.I visited my specialist who did a repeat bone marrow and said the MDS has,nt progressed which is fantastic.However i was keen to have the test to find out if i was a candidate for Revlimid and im was so disspointed when i didnt have the chromesome,,

so itis Tfs for me.I had a 15 month remission and last christmas it arrived back and instead of being transfused every 10-12 weeks i am not on 6 weekly.That was dissapointing ..

However im still breathing in and out and im fine

I have a problem with my breathing constantly,when i do any kind of lifting walking, bending up, and down etc,i am wondering if there is anyone who also has this .i have been checked out throughly by a heart guy and all was well there.My physician, i see in my home town, cant workout why i am experiencing this..iif anyone can please, throw any light it as to why this is happening??

it feels to me like the oxygen, isnt getting to my rib cage or is it lungs???i just dont know im only guessing.i would love some feedback on it if its possible.its relived by a transfusion, however its short lived and is back again and building ,as it gets closer to the next transfusion!!
also do all you transfusion folk, have a bad first week after the transfusion?? my first week after is horrible?? i have high iron and i thought it may be related to that?? we are watching the iron levels now with a view soon to do chelation,according to the specialist.

thanks everyone aussie danielle

[Chirley]

Hi, I'm not needing transfusions any more but I still get breathless. I was blaming my scarred lungs. My oxygen level is often in the 80s. But I've been started on a heart drug (digoxin) for an irregular heart beat and the breathlessness is a lot better. This irregular heartbeat wasn't always there so it wasn't easy to diagnose. I think you'll just have to keep complaining until someone takes you seriously.

[Cheryl C]

My understanding is that low red cells/Hb can make one breathless. If red cells are your major issue then breathlessness may be par for the course.

[Fana]

Hi..I have agree with Cheryl when your red cells are less you feel breathless..because red cells transport oxygen in your body..that's what I understood..