Friday, September 19, 2014

the phone call came

Well wouldn't you know, not 24hours after posting for the first time in months did I receive a phone call from Toronto for my meeting. I get to go down, find out exactly what the reconstruction entails, and meet the surgeons. (Yes two, since my case is that complicated). I've already met the aenetheseologist and though our personalities clash, I wouldn't want anyone else to put my to sleep. She has a way with arterial lines that don't bring me to tears. Despite the weird bedside manner I'd trust my life to her. Oh wait, I already have!

I am very nervous. I need information in order to process things but as I'm so rare, there is no info to go on. I have already read and now understand how the bypass machine works. I have an idea about reconstruction when the case of TA is in children but the fact that I'm 41 changes things. My body has had time to adjust and create new complications. More specifically, while in TO last year I learned that I have the jackpot of congenital illnesses. I don't just have Truncus Arteriosus, but also VSD, bilateral shunt, pulmonary hypertension (in my left lung only, thankfully), MAPCA, and all sorts of weird wiring. So when they say reconstruction, sometimes I wonder why they don't just transplant the heart. Actually I do know why: because I would also need new lungs having PH and all. We've already explored that route and though I am a candidate should I choose, the stats on that procedure for me, are not very good. Less so than this surgery. I believe. I will find out in a few weeks.

There is still a chance that I might not choose to go through it. They keep saying "what do you have to lose" but I don't think they realize, my LIFE. A few years with my (gorgeous) nephew is better than  only a few more months (surgery would be scheduled for later this fall). At least I would see him turn  one and hopefully take his first steps. I am thoroughly enjoying all the time I spend with him and though he is not yet walking or standing independently, I love when I take his hands and walk with him, he leaning into my legs looking up at "auntie me". I want to be around to run after him.