Sunday, December 8, 2013

The year in review...

Dec 2012-Dec 2013
Its been quite a year! I've been feeling a bit nostalgic as it was this time last year I was in Madison, WI for a week of testing to determine if I had what it takes to become a transplant candidate. It started with ~20 vials of blood and ended with a heart cath. There were all kinds of other tests in the middle (see previous blogs) including psych testing. It was mentally, physically, and emotionally draining.  And it feels like it was so long ago yet it was only a year.  Maybe I feel this way because this past year has had so much crammed in it.

I spent 7 anxiety filled months "active" on the transplant list; feeling trapped, tied down, never knowing when the phone rang if it was THE CALL. My lung function crept up a bit in July to 28% and I really wanted to take my son to Disney and take a break from the anxiety. And after lots of discussion with my docs I became a Level 7 which keeps me on the list but on hold.

Maybe the anxiety stemmed from it wasn't my time to get new lungs, God had other plans for me. I know I have a deeper understanding of transplants and organ donation and how we need so many more people to enroll as an organ donor. I know it is my job to help spread the word and raise awareness. I have accepted this but I sometimes wonder why God has thrown so much on our plate.  But I can't dwell on the whys, I must try to trudge forward.

The year has been full of many positives as well.  I created an awesome tshirt which is copyrighted and nearly 500 people in the US are wearing and over 100 in Canada!! That is awesome!! I have phenomenal friends and family that came together and put together fundraiser events. I created a facebook page (yes I fought it as long as I could) and have spread the word thru this media and have met some awesome people and reconnected with some awesome ole pals from high school and other past life experiences.
I also created this blog to help share my story and help me share some of my feelings.  This blog has been viewed by many including those in different countries.  The greatest accomplishment for me this past year was interacting with others affected by this horrible lung disease or transplant. Bryan and Kirstie in Canada, Pete from Ohio, and Bill right here in Michigan---it has been a pleasure talking with you and helping each other in this journey.

I'm not sure when the trigger will be pulled but I will continue to fight. I am tired, I am weary, but I am alive.
THANK YOU TO ALL WHO HAVE SUPPORTED ME OVER THIS PAST YEAR!!!! It is true, you find out who will stand with you in the fire and who stays back. I could not do this without all the love and support  from friends and family. Even those that are praying for me who don't even know me, please know I am so thankful.
My husband has stayed strong and has not left my side, he has seen my tears, my bitchiness, my anguish, my pain, my fatigue, my pride, my stubbornness (I call it determination), my hope and has never left. Even when I wouldn't blame him if he did, he truly knows the meaning of "In sickness and in health." His love does not waiver and for that I am eternally grateful.

Here are some pics for the year in review:


  1. When do you think you will put yourself as active again or don't you know yet at this point?

    1. It's a day by day fight and will have my lung fx rechecked in Jan.

  2. It has been quite a year that's for sure. Canada friends send all their best and prayers. Happy to see your year in review and great to see the pics of your vacation. We continue to be and always will be your support for B.O and Organ donation.

  3. You guys have really been an awesome highlight in my journey. Thank you from the bottom of my heart for your support and friendship!