November 19, 2009
My first entry, do I belong here blogging? not sure yet. However I know I have alot to say and I think even if I pour out my feelings, thoughts and words on this blog I may feel better and maybe help someone who is also going through what I am going through.
Chapter 1: I am a mother, wife and teacher. I have Idiopathic Pulmonary Hypertension. I need new lungs.
I was diagnosed in 2007 with PH and really the success of the oral medications were great at first but then had limited value as time went on. I really think my body wants to be rid of PH and start a new life, hence the new lungs.
It really has been a huge roller coaster so far, imagine the Comet at Crystal Beach (for those who know it) or the Great Canadian Mind Buster at Wonderland. Either way those coasters are scarey, unpredictable, bumpy and gives you a rush. I wouldn't say PH has given me a rush but I have my happy, fun filled moments, you need them!
Anyways as it stands now I am on Flolan and IV drug that is given via a pump (named the pump Chad he is my other husband) and it isn't working out as well as we hoped. So Chad and I will be getting a divorce as soon as my new lungs come into the picture.
Chapter 2: The waiting game!!! So its only been 6 weeks since I have been on the "list" at Toronto General. I go to physio 3 times a week. (thats a whole new story) and am on O2 24/7. Its a bitch!! Really not only do I have Chad attached to me now I have oxygen on all the time. It does help though, however not really a fashion statement. Vanity thy name is!!
9 months ago