Heya Blogland, 

I have officially given in and am now on oxygen. Well I gave in last night at about 2:30am because I was not getting to sleep and my head was banging and elt like it was going to explode. I took a tonne of Calpol (The only thing I feel safe taking in relation to my other medication) but still nothing. So I gave in because my chest was starting to hurt and I could feel my heart pounding. I'm only  on 2.5litres a minute which seems to be keeping my headache/migraine at bay and my chest feels pretty relaxed. 
Oxygen time
I really try not to use my oxygen very much. I got given it back when I was 14 and I used it for a time but they problem was I became dependant on it and if I didn't have it one night for instance I would know about it the next day. So I decided that I would ween myself off of it and then only use it wehn necessary. I managed to not use it for 5 years. In the past 2 years I've had to use it more and more, when I have colds or just when I feel rough. It a way I can tell I'm getting worse because I knew I was stable for those 8/9years. Now I can feel myself getting worse. I can barely walk to the bus stop now which I could easily do 6months ago. Now my sister and dad are just my personal drivers LOL. 

I feel the same way about my Iloprost too but the only way I'm going to get off of the Iloprost is if I go on Flolan. For those that don't know Flolan is a line that goes directly into the heart and it works really well for some PH patients but the problem is because I have holes in my heart the likelihood of a stroke is more likely. Also the procedure scares me all my operations I've ever had have been asleep but this one wouldn't be. I know why they have to do them awake because ovbiously you can't keep doing repeat procedures on people asleep and not expect there to be reprocussions due to the general anathesia. So I'm really trying to perservere with the Iloprost and just hope it gets me to my transplant. If the time comes that I have to go on the Flolan I will and just pray I don't have a stroke but until that day gonna keep smiling :-) 

Well thats it from me I shall write soon Blogland
Stacie xoxo 

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