Tuesday, February 4, 2014

We Need Lungs and We Need Them Now!

Fighting For Lungs:

  I know many of you are following my blogs about my best friend Laura. If you haven't read my past blogs about Laura's struggle you can read them here: First Blog: The Reality- Beginning of Laura's Fight and 2nd Blog: The Big Fight- Trying to get a Transplant Before it's Too Late. These two past blogs will catch you up on the situation and help you to understand the hardships Cystic Fibrosis patients go through. Especially the transplant journey, which is full of procedures, exams, doctor's appointments. And that is pre and post transplant (tx). Transplants take time, dedication, and lots of hard work! Which I know Laura can do!   (Picture: Laura doing her nebs yesterday!)

However, transplant evaluation is a long process. You can't be considered until you reach a low enough lung function, but then like in Laura's case a couple of bad lung infections over just a few months dropped her lung function to 18% and she continually declining. However, now because she is so low it is harder to the team to decide. Which is scary stuff. I do think about what this could mean for me in the future too, which is a whole different worry on my mind. The whole process is complicated and with CF being so complex and unique with each patient it can make it more difficult. Different centers have different standards too. Some states have tons of restrictions, like weight, type of bacteria in lungs, diabetes or other medical complications. And these can get in the way. However, some centers are amazing and accept even the most desperate situations. Laura did get denied (due to some complications) at her Florida Transplant Center, but she is trying Duke in North Carolina next. Here is a link telling you about Duke: HERE!! Duke accepts transplant cases with more severity such as low lung function and higher risk . problems. Another great center, which even accepts Cepacia B. cases is UMPC in Pittsburg, PA. What is Cepacia B.? Well here is an explanation for ya: Cystic Fibrosis Foundation's Cepacia B definition. Read about them Here! Therefore, hope is never lost. Here is a youtube story about Jamie (JamieBug). She picked up and moved to another state to get her lungs! She is a great example for other CFers who are struggling and feeling lost!

The video is about 9 minutes, but you will get the full story pre-tx, during tx, post tx! Please watch it to understand nothing is impossible. We just have to work very hard for it!

or watch at youtube: JamieBug's Lung TX

Now to read about Jamie today, visit her blog: http://jamiebug.blogspot.com/

She is great example of what hard work, determination, and the community's support can achieve! But in order for Laura to be able to go to North Carolina's Transplant Center and keep fighting we need to help support her!  There are many things you can do: 1. Send her a card! (message me for her address) 2. Donate to her online fund:  Right Here!

Let's help encourage her and help her get new lungs! You can do it!

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