Skip to main content

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!

Comments

Popular posts from this blog

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...

Calling All Who Care!

     Please Read : Okay, so first off I want to say that this post is tough. It's tough to think about and write. However, it is extremely important and a huge topic in the CF Community, and is VERY NEAR AND DEAR to MY HEART!  First I want to ask you... What if I told you I needed a Transplant. That I needed to reach a certain weight, get my kindeys functioning better, get a higher pain tolerance, and get off a couple medications I take right now. What if I said I couldn't receive a 2nd chance at life unless I reached these goals and I raised a certain amount of money that seems impossible to raise. What if I had been in and out of the hospital off and on for the last year, with many surgeries, had multiple infections and my lung function dropped from 40s to the teens and now is slowly dropping still. What if I was starting to wonder if my decision to go through the grueling Transplant tests was worth it. What if I start to get down about my cf and wondering why ev...

Beginning of the Year Troubles

Normal "beginning of the year" troubles for Andrew and I only really consist of one topic: Our Deductible [please no Obama, or government bashing] I've always had high deductibles ALL MY LIFE (no matter who was president). The problem is I hit my deductible within the first week of January. In the past I have always prepared for this and since I was still on my father's insurance (up until last year) he typically paid the bill (at least for medical stuff). And in the future Andrew & I won't have such an issue with this. We will be able to save and plan ahead for the $3,000 (for my deductible, his is another $3,000). However, this year was more difficult. We saved all 2013-2014 for our wedding & honeymoon, plus had our deductible saved too. But Real Estate was a pricey career to start, I've put almost $5,000 into it (classes, dues, licensing, exam, advertising, etc). So needless to say our deductible disappeared, thanks to my new career. Wh...