Important Update

I haven’t written in awhile, mostly because I have been trying to process what is going on.  I am not sure who to tell or what to say.  The truth is that I feel I am supposed to tell you. 

Last week the lung transplant team at Stanford met to discuss my case and to make a definitive decision of if they would be willing to transplant me when the time came.  After they had their meeting they sent my doctor in to tell me the news.  He looked me in the eye and told me that the team had come to a unanimous decision.  No. 

As simple as that my fate was laid before me.  I could see the defeat across his face and the near heartbreak in the physique of his nurse.  My heart didn’t stop, it didn’t sink, it didn’t harden, it just kept beating.  I don’t know if it was shock or if it was peace, but my first reaction was reactionless.  Maybe I hadn’t dared to hope that I was really going to get a transplant, perhaps it was a slight reaction of relief that I wouldn’t have to bare that pain, but really I think it was disbelief and denial. 

I woke up the next day and for a few moments I believed it had only been a bad dream.  Did that conversation really take place?  When I asked my doctor what was next my heart was begging for a plan of triumph, a plan for war.  I am not ready to give up without a fight.  The first thing that came out of his mouth was that eventually I would be looking at hospice and he asked if that was a term I was familiar with.  That is when it came, the flood of tears, my heart broke, I reacted, but I wasn’t about to accept it. 

I have sat mostly in silence over the past week as these conversations have continued.  I have known the answer they were all looking for, but I didn’t offer it.  Instead I have been processing and taking in all of the statements, opinions, and facts.  I still am. 

The battle isn’t over.  I can search out other facilities, I can look for second opinions, but I also have to look at the facts and the risks.  Tomorrow my parents and I are meeting with the doctors to discuss my case further and to really look at what my options are.  I hope to understand why the surgeons made the decision that they did and perhaps that knowledge will lead me to a different conclusion. 

It was explained to me that I have a choice to make, but no matter which battle I choose, I don’t have to fight it alone. 

The answer is that I will fight.  My answer is yes.  My answer is that I want to live.  I believe in miracles and I have seen God perform them again and again.  I believe that my job is to have faith, it is to rely on God, but it is also to fight.  Until He tells me otherwise, to obey Him is to fight for the life He has given me. 

One of the things that I often find myself questioning is the line between quality and quantity of life.  I look over the last 8 years and they have been hard, harder than I could’ve imagined.  But, as hard as those years were, they have also been some of the most rewarding years of my life. Who am I to say what qualifies as a good quality of life?  Maybe what feels like quality to me is different than what is quality to God?  I trust that if God wants me to live that the quality of my life will outweigh the adversity I have to overcome. 

Prayer for peace, discernment, wisdom, and a gracious spirit would be appreciated.