Saturday, August 2, 2014
TRYING TO BE PATIENT & ADDITIONAL RAMBLINGS!
As I wait for that all important call that my new lung is here and I am to report for transplant surgery, so much goes through my mind. It bounces all over the place. I work hard to stay positive - I WILL get my transplant. It’s just a matter of time. I have been encouraged by the Transplant Team to think this way; they are confident.
I have the utmost confidence in my Team. To me, they are “rock stars”. They’ve got this. I like that. It helps me when I’m feeling a bit scared to remember that they have complete confidence that I am going to get my transplant and that they can pull this off for me.
Waiting is hard. They tell us it will be hard. They tell us to expect ups and downs throughout the entire process. That would describe this past week for me. Some days are worse than others. Worst day ever since getting this awful disease was on Thursday. I couldn’t even make it to Rehab that day; I had to “call in sick” and I’ll make it up another day. I really hit the wall that day!
It’s rough having so many tests and appointments and Rehab back to back and I think it took its toll. Those days are scary but I do what I can to get through them.
I want this, even with all the uncertainties and challenges that come with it. I have met and heard stories of successful lung transplant patients. I’ve heard the story of a man who could have been accepted for a lung transplant but refused to stop smoking so he was turned down and is in hospice. I can’t relate to that.
I want more time. Time to be with my family and friends. I’ve been sick nearly 9 months now. I can’t believe that much time has gone by and this is where I am. I try not to think of timeframes but it’s hard not to. Could I get my transplant in a few months? Maybe by Christmas? At least this year?
Some days I feel confident that I can handle what all this will entail. Other days I’m not so confident. Ups and downs. But I have been spending a lot of time these recent days working on preparing myself, thinking positive, telling myself I CAN do this; I WILL do this.
I had some tests this week that have the potential to increase my Lung Allocation Score, so I wait to hear if that is the case. More waiting.
So the days go by; sometimes it feels like a snails pace. Other times it seems time has flown by. And I wait. Well, if anything, this is a learning experience in patience.