To say this is when my life truly turned upside down would be putting it mildly, but it’s a good place to start.  Small bowel and multi-visceral transplant is like entering a world of its own… although when we entered, we were sadly given the false pretense, that although it was newer and more complicated, it was at least comparable to other organs.  As a patient making my decision based on quality of life, knowing the full truth to make an educated decision was all that mattered… and in my opinion, even if it is a life or death situation, the patient should have the right to know the full truthful picture no matter how scary it may be.  Doctors and hospitals may think they are protecting us, but when procedures are in such experimental stages… the answers so unknown when complications occur… we as patients and families have the right to decide if those risks are worth our bodies.  We discovered the truth as the post-transplant days continued, in fact my days of false answers started the minute I awoke, but what could I do?…ask for my old organs back? lol.  I say it with a laugh, but the truth is being lied to was one of the worst feelings, not to mention one of the key pieces of info behind our decision for transplant timing… and then what led to added surgeries needed as a result of the way they did things, that bringing even more complications that followed.  It’s anything but funny, but I could either get angry about something I couldn’t change or choose to save what little energy I had and put it towards healing, doing what best we could with what I now had and move forward…

There’s obviously a lot to tell in this crazy world we’ve come to know as Transplantland :)… our friend in clinic even nicknamed the city OZ and it stuck!  That pretty much sums up how crazy and out of this world this entire thing is!  Once we’ve arrived in OZ though, we have to keep following the yellow brick road and hope and pray that our surgeon and wizard finds an answer to our miracle in his bag of magic tricks. 🙂

I don’t have my story here on the blog yet for you, but after transplant we started a medical journal on a site called CaringBridge.  There I wrote updates through my last surgery and up to a couple years ago.  The updates stopped when I had hoped to take over with this blog, wanting it to be more than just medical (but I failed to get this going as well, so I’ve been MIA on all ends…Oops!).  You can follow the link below for plenty of post-transplant journals and reading… mum updating things when I was in the hospital as well.  I’ll also have a summary coming soon. 🙂

http://www.caringbridge.org/visit/mariacostello