The New Me

Simon on cloud nine with his "bestest girl friend Abby"




What a great week it has been. I was able to make it home to Maryland for the first time since I left in a breathless rush on 07/07/2010 and was admitted right to the hospital. A few days after that I was in ICU and the rest is kind of a blur. I survived thanks to the incredible staff at Chapel Hill, my caretakers Rebecca and my Mom, Gayle. Mentally, I had to draw support from the thought of somehow making out of a second transplant and being able to just hug and experience life with the boys, Simon and Matias. To do this, I relied on all of my family and friends that were pulling for me. It was like I was sending out an SOS, a message in a bottle, while I was waiting for another donor and I could feel a huge support network pulling for me. The same thing with recovery. There were plenty of times where I complained and thought I just couldn't do it or things were going wrong again and without people pushing me and sending me messages of support, I wouldn't have been able to have stayed sane. One time was enough, but a second time??

So, to be home and see my house and yard with the beautiful fall foliage was symbolic. We were lucky enough to visit with so many people even though we were there such a short time. We devoured incredible food and even were told to keep it down at one restaurant, we were having so much fun. (or at least one of us was told to keep it done ;-)) So, thanks everyone for a great weekend.

I don't know why I deserved yet a second miracle chance, all I know is that I am still alive and doing incredibly well, in the big picture. The lungs feel exceptional and I am gradually starting to retrain my breathing muscles to use the full capacity of these lungs. For over 10 years, I had been taking very shallow breaths and using my accessory and neck muscles to breathe. It is easy to fall into that habit. But now I need to strengthen my diaphragm and intercostal muscles to take full deep breaths unconsciously. There are trade-offs with the New Me. My next post I hope to provide a list of all of the side effects, and little subtleties that are different in my body. It will take some time to get use to. But to give you an idea, diabetes, neuropathies, shaking, sensitive skin,aching bones.. And the list goes on, but it makes you feel different. I will explore that in a future post, as I want to point out to people that are waiting for transplant or have just gone through one what might be possible to experience. However, with all of these bothersome issues, to be able to breathe and have fun again is more then worth it. They should call people with Cystic Fibrosis who undergo transplant something like CF 2.0 We have a new lease on life from some selfless hero and their family. Which between the two of us is a New Me.

Happy Halloween