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Thursday, February 2, 2012

Highly Emotional

I have been extremely emotional lately. I'm usually pretty high strung around this time of year though, being that I'm so close to my transplantiversary. Every year I start to go through my blog entries before, during, and after transplant and am absolutely amazed at how far I've come!

Just 3 years ago around this time, I was beginning to wonder if I was going to survive to transplant. I recall saying a prayer every night before I went to bed for God to just let me wake up in the morning. Just let me survive one more night. I knew my time was winding down and there was nothing left for me to do about it. I was depressed and scared and frankly, just down right pissed off that I had to go through the torture that is waiting for a double lung transplant.

4 years ago, I was just getting use to the idea that I was going to need this surgery. I wish I could go back in time to let myself know that things turned out ok, that the surgery wasnt as bad as I thought it was going to be and that I survived. That was the biggest thing that held back my going forward with the transplant process.

It's funny though if you think about it. In order to say that you want to live, you have to be willing to undergo a surgery that could very well cause you to die. You have to be on death's door. You have to be able to accept all of that and then move on slowly hoping that someone along the way had signed their donor card and told their family their wishes to be a donor AND they have to be a good match. If all of those little pieces fall into place then you get the greatest gift of all. You get to live.

Even better, you get to live with health. Something as a CF patient, was a little hard to comprehend.

Don't gets wrong, as a child, I didn't realize that I was "sick". It wasn't until forth grade that I knew that my lungs were much different than anyone elses when I got sick and had to do inhaled antibiotics for weeks. That's when things began to click. Even though I knew I had cystic fibrosis, I don't think I really understood what it really meant for my future.

Having everything happen to me the way it has, however, has been a blessing to me. It's allowed me to meet some great people online that I am so proud to say I'm part of that community. It was allowed me to look at life with a sense that I'm not taking a second for granted. I'm living life with every breath, every beautiful, deep, perfect, healthy, donor lung breath :)

With all of that being said....

Earlier this week an amazing advancement in the CF world happened. The FDA approved a drug that corrects the underlying cause of the disease. It will only work for one mutation though, even though there are thousands of combinations of the CF mutations. This drug will only work for G551D. Not the mutation I have. In fact, not the mutation that the majority of the CF world has. But it's a start. It brings hope to thousands that the cure for all of us will be found during our lifetime. And even better, that all of the children being born now have a chance to live completely normal lives!

I don't know where all of tears have come from this past week, but I do know that I am thankful to be alive because someone said yes. I am thankful for the brilliant people who are so close to riding this disease. I am thankful for all of the donations that my friends and family have given the CFF, because without them all of the funding needed to make this leap wouldn't have happened.

I am thankful at this time of year and I am blessed

1 comments:

Anne said...

Hey Jen...I think I've read your whole blog! You did a fantastic job! Congrads on your engagement too! I hope you're feeling well :) You helped by giving lots of great info. I'm listed at Cleveland Clinic for lung transplant.
Thanks..Anne