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!!
Survivor's Guilt
5 years ago
this is great! what an awesome idea.. I'll be here every step of the way...
ReplyDeleteWelcome to the world of blogging, beautiful Shannon.... write away!!!! It is a great place to let all those thoughts and feelings spill.
ReplyDeleteI'm here every step of the way too. xx
Hi Shannon! I noticed you had read my blog, so I thought I'd check out yours. So far, so good! I have a friend on the heart transplant list for Toronto General. He's been on and off the list for 3 years, but has been active on the list since last year. He's had a couple calls, but they didn't pan out. It's really an emotional roller coaster, and he's blogging about it as well. I think it's great that you are going to write your story, because it's going to be filled with emotions that sometimes need to just be let out! I hope you won't have to wait so long for your new lungs, and a new beginning!!
ReplyDeleteColleen :)
PS-I've been on o2 for almost 9 years, and yes, it was a drag at first, but gosh, my lungs were screaming for them!! lol I've gotten to the point where I don't give two hoots what people think about me wearing it. I'm alive and able to breathe!! :)
Hi there! I saw you joined my blog too and just wanted to wish you all the luck in the world for a great new set of lungs to arrive very soon for you. Prepare for a ride and a half, but the best transformation you could hope for - it's nice to breathe again and to get rid of that Oxygen...!
ReplyDelete