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...

Holding Down the Fort

My husband, Andrew, is currently at Wartburg Theological Seminary and is starting his first week of his second year there. Every year he lives on campus for one week. He enjoys starting each semester on campus where he can build friendships with other students and professors. It's the only time he is on campus. Usually he does long-distance learning, online, from home. It was the only way we could manage him doing a four year Master degree program while working. This week is the hardest for us. However, we have something on Thursday and Friday this week, so Andrew will only be gone 3 days instead of the typical full five. So that will make this week a bit easier than the other semesters. It's hard for Andrew to be away, although I know he is having a blast. We send random pictures back and forth like a book he may be reading or a game I may be playing with our kiddo. It is hard for the kid(s) to not see Andrew every day. We are foster parents and stability is a BIG issue for ...

Sunny Days!

Since my last Cystic Fibrosis clinic, which you may have read about on my Facebook page , I have been working on a couple goals... both medical and personal. And boy do I love this summer weather! Summer weather combines one medical and one personal goal!! EXERCISE + MORE FAMILY TIME! I'm not one to enjoy extreme heat (90+), but have really LOVED the nice days outside with the family this summer! Sun (+sunblock LOL), freezie pops, flip flops, YES PLEASE! We have even spent some time at the lake this summer! Our kiddo(s) LOVE(S) the water and so does Andrew! I don't enjoy being IN the water as much as I like being ON the water. We have spent a dozen days this summer at our two favorite park/splashpads as well! Even days spent at home are usually in the kiddie pool. We are enjoying this weather and getting some exercise too! WALK! I try to talk advantage and do some walking when its nice out and I feel good. My Physical Therapist at clinic said it needs to be 15 mins of full acti...