To tell you where we are, we must tell you about where we have been.  This all started in 2013 Aurora was diagnosed with Pulmonary Hypertension, a rare disease for a 12-year-old girl so it went misdiagnosed for a year until it was discovered.  Only 50% of people diagnosed live past 5 years, it is an awful chronic disease.  Aurora was not someone who would have made it to 5 years, after 2 years she received her first double lung transplant at Boston Children’s Hospital.  Her surgery was successful, and we got to go home fairly quickly.  We tried to find a way to enjoy all the things that had been taken away with pulmonary hypertension, like going on walks, swimming, and showering without it being an ordeal.   

About a year and a half later Aurora noticed she was getting short of breath when she would walk. We quickly learned this was chronic rejection and was only getting worse.  Inevitably leading to her second double lung transplant.  Watching her decline and waiting for transplant was one of the hardest things I have ever done.  He recovery the second time was much harder taking almost 4 months. 

There are three types of rejection. The first is Acute rejection which is when you get a virus, and Aurora would get extra steroids or meds, and we would get back to normal.  Then there is antibody rejection.  Where a donor antibody becomes active and if it cannot be made inactive it can lead to chronic rejection which is what happened to Aurora.  She was just getting used to being an “average” person and living her life.  She went back to school, was studying culinary arts, and has her first boyfriend.  We are still in a state of shock, trauma, sadness and angry that we are here again.   

Third transplants are rare, so rare in fact we do not perform them in Boston.  We have the best hospitals in the World, so this came as a huge surprise to us.  But if Boston is not the best then we want to go to wherever is.  Duke University Hospital has had the most success with third transplants.  There have only been 23 ever in the United States and more than half of those have been performed at Duke.  Our fate now lies in their hands.  We have all the paperwork in and are waiting to hear if Aurora will be accepted for an evaluation.  If accepted she will potentially have a third double lung transplant.  This acceptance comes with a commitment to move to North Carolina for 5 years.  We have no other options other than to be accepted so please keep praying.   

So not only do we have to go through the hardest experience we have ever been through again, but now we must do it in another State, away from all our friends and family.  The reality of that has not hit me yet.  The only thing I can focus on is taking care of Aurora and keep her strong enough to make the trip to North Carolina.  I cannot let my mind go to the what ifs, the things that can go wrong, the risks and complications. I want this to work, I want them to figure out why her body keeps fighting against her.  This is too much for one person to go through again. 

This Blog is going to be a way for me to keep anyone who want to follow along on this journey updated.  There are times it may be humorous, and at other times it could be quite sad.  It’s always going to depend what part of the journey we are currently on.  More to come and thanks for coming along with us. 

Much Love, 

Michelle & Aurora