So it was a very good day today in regards to education. After doing the “deck of cards” Neil and I had some lunch and then headed over to Kaye Clinic for our one on one with the nurse coordinator “Sally”. This was finally an informative hypothetical trip from pre- to post lung transplant. We were discussing what happens when you get listed, when you get the call, what happens during a dry run, types of lungs that would be accepted or not accepted. The one thing I did learn,that was fascinating, is that once someone decides to “pull the plug” on their loved one who is on life support you have a 2 hour window for their heart to stop. If it does not stop within 2 hours the lungs are no longer viable. Some people last hours post plug pull. I could not imagine the complete and shear devastation your loved ones are stuck in while waiting for the heart to stop. I think it would feel like hell.
As we were talking about all this extremely serious stuff I found myself going out of body and really grasping the situation I am in. It was ethereal and bizarre. I could see Sally’s lips moving but I wasn’t listening, I was lost in my own head. Neil had lots of questions and that would bring me back to earth but as we talked about all the things that could go right and all the things that could go wrong I just sat there, in my silence, thinking- holy shit this is insane. This is not real. I must be dreaming. I must be in a nightmare. It can’t be my life. It can’t be the way I die. It’s too scary. It’s too huge to handle physically and mentally not to mention emotionally. No, this isn’t how my book ends…And then I caught myself and I whispered to myself- “when the time comes, its in God’s hands” and that thought right there gave me great comfort and turned the conversation back into informative and educational. It’s my job to get there as healthy as possible with the least amount of crazy as possible but its in Gods hands to get me through.
The part I have disliked the most about this past 3 weeks has been having to face CF everyday. I can’t escape it. At least at home I can go to the gym and feel like one of the athletes or have a nice lunch with a friend or just go walk my dog and feel ‘normal’. Here I am constantly reminded that I am living in Edmonton because I have a set of lungs that are failing me.
I am looking forward to resuming my life. It feels like when you are watching your favourite program and a “breaking news” story cuts in and you are alarmed and alerted and then its over and you go back to your program. Only you’ve missed part of it and you feel like it was important. Right now I am the breaking news story and shortly I can go back to my regular programming schedule.
I look forward to that part. That’s it for me, I should be in bed. As it is Valentine’s Day I want to tell all of you to love yourself first!