Running on low

Today, I received my letter for my next hospital admission, which will take place in just under two weeks' time. However, there's a huge, huge catch.

I was told today that I need to get a FBC and clotting screen done prior to my admission to check that I'm OK for surgery. Problem? My serum iron level is 2 micrograms, but according to my haematologist, it's supposed to be 100. I don't eat red meat by default, so I literally have no way (apart from the transfusion) to raise my iron and therefore my Hb levels. We are really praying that the transfusions are able to top up this huge deficit, because I'm really bearing the brunt of this.

I can't get changed without my body hurting all over and without fainting. I can't seem to do anything without feeling like I'm going to pass out. Things that just used to make me ache before, now give me extreme pain. Getting changed from showering this morning, my body hurt in the same way it used to towards the end of a long-distance run, if not worse. To top that off, the nausea and dizziness that came over me was unbearable and I just felt so inadequate and frustrated that I can't even do the simplest tasks without feeling this way.

Yesterday and today have been difficult days; counting down the days to the transfusions, infusions and surgery is painstakingly slow. I'll also be getting a DDAVP infusion soon, and when I'm admitted, to boost my coagulation and make my blood and platelets behave! I need to go up to the hospital to get yet more blood taken, this will be the fifth time in two weeks that I've needed to get it done. So far, I've had  on average ten bottles drawn each time, and on top of this, I bleed about 100ml blood per day from what is/was the AVM.

Everything just feels like such a drag; I have no energy to do anything, and everything I feel like doing makes my head swim. I've never felt like this before, maybe I've had off days, but this has been a string of days, that has become weeks, of feeling like this. I'm just glad and thanking my lucky stars that I have a great haematologist and surgeon who want to help me get better.