Wednesday, March 17, 2010

A Few Things

1) Thank you all SO MUCH for the comments and critiques on my "positivity" blog post. This was far and away the most successful "blogger challenge" we've had yet on A Matter of Life and Breath, and I have had SUCH a good time reading everyone's very informed, honest, and interesting perspectives. For those of you who would like to read more, here's a list of some of the blogs that featured discussions on the topic (sidenote: if your blog is not on this list and you have written or plan to write on the topic, please let me know and I will add it ASAP). Also, a HUGE thanks goes out to Ronnie and his always amazing Run Sickboy Run for bringing a lot of really great people to the table on this one. You guys continue to inspire and impress me, as always.

Welcome to Joshland
I Have CF So What
A Day in the Life of a CF Mom
Jamiebug's Cepacia Lung Transplant Blog
Lovin Lane
Breathing You In

(As I mentioned, I really hope to grow this list if people have more to say -- and if you're anything like me, there is ALWAYS more to say! -- so please keep them coming, and feel free to alert me to any blogs not yet on the list. I try my hardest to keep up with the CF community blogs, and if I'm missing one I always want to know!)

2) Transplant tidbit of the day:

Did you know that cystic fibrosis is the third most common reason for lung transplants in the US? It's behind Idiopathic Pulmonary Fibrosis and Emphysema, respectively. IPF just recently (sometime in the past few years) beat out Emphysema for the #1 slot. About 1600 lung transplants were performed last year in the US.

Okay, I don't know about you, but that makes me pretty excited. Don't get me wrong, I'd prefer NO ONE ever needed a lung transplant, obviously. But consider that the first successful double lung transplant wasn't even performed until 1986, and the first successful CF lung transplant wasn't until 1988. That means that in just about 20 years we've taken this medical technology from a whimsical pipedream to a medical reality for over 1,000 patients a year suffering from end-stage pulmonary disease. Um, wow.

And beyond just the "wow factor" there's also the "someday soon" factor -- as in, maybe someday soon they'll be able to "grow" lungs to perfectly match your body using your own stem cells and DNA. Or maybe someday soon they'll be able to combine bone marrow and lung transplants to successfully wean patients off of immuno-surpressive therapy post-transplant (a reality already for certain kidney and liver transplants). Not to mention new therapies in the works for lung transplant treatment such as inhaled cyclosporin, a nebulized version of a key immuno-surpression drug that allows the medicine to go straight to the source, bypassing other organs where its affect is not needed.

I do believe that it's entirely possible to imagine a world where CF is no longer the third most common cause for lung transplants -- as CF therapies grow and reach new heights that day seems closer and closer. In the meantime, however, I can't tell you how excited these new developments in "transplantland" make me. Honestly if I'd known medical science was this interesting, I might not have been an English major (freshman year biology grade notwithstanding, of course).

3) Speaking of transplant, please keep your hearts and minds open for a lovely and inspirational young woman with CF named Emily Haager. This surfer cyster/ambassador for the CFF has lived her life encouraging CFers to be active, hopeful, and happy, and she has now been in the ICU for over a month after a sudden and unexpected health issue. She is currently on the vent and hoping to recover enough to receive a lung and kidney transplant soon, but her family is requesting that all of her beloved CF community join them in prayer for this remarkable woman. If you are not already aware of her story, please visit her blog or her carepage.

And that's it. For those of you interested: I stopped IVs this past Friday and have been LOVING the beautiful NY spring ever since. Is it a coincidence that I feel better just as the temp hits 60? Um, I think not! And my recent walks down to the Statue of Liberty/Battery Park with my puppy prove the point.

Happy spring, beautiful people.


  1. Piper,

    I have posted a blog about your "positvity" post as well. I hope everyone will check it out.

    Thank you so much for your talent in writing and inspiring us with your positivity and care for all of us and our perspectives. I'm glad your IV's are almost done and the weather is improving. Lungs, soon, I hope.

    Pulmonarily yours,

  2. Thanks so much for the info Piper! I actually borrowed a tidbit of it for an "awareness update" on my FB page :) I hope you don't mind!

    I hope we see you with new lungs soon & I'm so glad you're off IV's!

  3. As I was driving home over the Geo Wash bridge today I was trying to catch a glimpse of the SoL, and couldn't without hitting someone haha! BUT I want to come down this summer for the day to go there. I have never been! And maybe you can join me with the new lungs and since we will be outside it will be ok? But only if it is far enough out that you can be around people and me :)