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65 Red Roses

thoughts on living with CF

Name:
65redroses
Birthdate:
31 March 1984
Location:
Website:
External Services:
  • 65redroses@livejournal.com
I started this LJ just to be about the part of me that I have trouble relating with the people in my life. I wanted to find others out there who have Cystic Fibrosis to make friends and have someone else who understands.

But it has become so much more than that. Since I started this LJ over three years ago I have undergone a great amount of change in my life.
In October of 2006 my doctors and I decided it was time to start the long process of assessment for lung transplant. The realization that I was at a point in my life where I needed a lung transplant in order to live was a very frightening thing to face. But honestly, the hardest part was making that decision. And once I accepted the truth about my fate there really wasn’t a choice. Yes there was a chance I could die during the transplant but without it there was no chance of living. After wrapping my head around that it was much easier to deal with everything else. I had a plan. I knew that I was going to get a lung transplant and that it was going to work. There simply was no other option and no point in dwelling on anything but the positive.
It got worse before it got better. After 7 weeks in the hospital with chronic severe pain due to my failing lungs and all the complications they caused, my doctors decided to send me home for a couple of days to reduce the anxiety I was experiencing. The next day on October 23rd 2007 my pager went off and I received a double lung transplant. I realize this is an amazing gift that comes from a hard situation for some other family. I am so grateful to those anonymous donors for allowing me to start living again.
Recovery was a difficult but exciting experience. For years I have gone to the hospital not to get better but to try and not get worse. And now, here I was getting better everyday.

Now, doors that have been slowly closing on me are all of a sudden swinging right back open. I’m back in school, finishing up my credits to graduate. I’m back at work part-time running after-school programs for kids. I moved out with my best friends a year ago. I am positively ecstatic about my future. I feel like happiness radiates out of my pores. Even when my anti-rejection medications have me shaking like a leaf, I know that it will get better. I am well and able to run, skip and cross-country ski. I have so many big plans for the future but for now I have so many little plans, so many tiny victories.

This journal is now a place to celebrate those tiny victories. May there be many more to come!

Oh and there is also a documentary being filmed about my process through the wait for transplant, the surgery itself and the long recovery process. It is an edgy, youth oriented film that will be broadcasted on CBC's ' The Lens' next november. The film also focuses on the friendships I have developed over livejournal and how we connect across the world in regards to our similar health isolation.


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