Friday, November 11, 2016

News we've been praying for!

I got a phone call 7:30 Monday evening from my nurse coordinator at Cedars-Sinai. Benito and I were watching tv in bed so I put it on speakerphone and proceeded to hear the best news I've heard in a Long time...
The lung transplant team hired on a new person that has experience working with petitions to unos so she and the team have been working extra hard for the last month to get all my records re sent along with another petition letter to ask that unos make an exception in my unique case so I can be brought up the heart list where I actually have a chance of getting organs instead of waiting at the bottom while my lungs fail. As of Monday evening I'm officially listed on the heart list as a status 1B instead of my previous status 2! What does this mean...
I am told I have approximately 7-10 people waiting ahead of me at Cedars as a status 1A and the majority of people are men who will require larger hearts for their transplants to be successful. I on the other hand can accept a woman's smaller heart or even a man's large heart because of my CF barrel chest. My nurse coordinator told us that my call could potentially come at any time now... It could be tomorrow or January, but it's no longer a question of whether I'll get organs anymore, it's only a question of how soon it will happen. Before hanging up my coordinator told us that he didn't want to say that they had given up on me, but they really did not know how they were going to make sure I got lungs in time. They are really excited about the change as well. Such a great feeling knowing my transplant team cares so much about me and my future.
This new change in listing placement also means that I will still be able to donate my own heart to another Cedars-Sinai patient waiting for their gift of life. As it was, we were looking at me having to wait until my heart inevitably began to fail due to the stress my failing lungs are placing on it then and only then would we be able to attempt to bring me up the heart list. That's all changed now, thank God! It was such a difficult thing to ask God for my heart to begin to fail so I could get lungs... My prayers have been heard and something else came along that made it possible for me to get my transplant while still being able to donate my heart to someone in need. God is GOOD, you all!! Whether you're a believer or not, it's hard to ignore that there has been a higher power at work here...
I lost a very dear friend from high school this last week to a heart attack of all things... I can't help but feel like my friend Andrew was part of helping make the impossible possible. With the help of the amazing team at Cedars-Sinai, my UCD doctors with their persistence in getting Cedars to not give up, and my wonderful friends and family, I've been given HOPE again!! Thank you all SO much for all your prayers, donations to my transplant fund, love, but most of all, thank you for your faith in my ability to persevere through all that I've been up against this last 18 or so months. I get my strength from you and your love and faith in me. Thank you! 
Meanwhile Benito and I are making sure we're going to be ready for that call to come any day now! :-)
Stay tuned!

Leah's GoFundMe Transplant Fundraising Page