I received some fantastic questions from last Wednesday’s post. A BIG thank you to all who reached out. Cystic Fibrosis Awareness Month is about learning, educating, and helping people understand – and your questions are making it possible to do just that! (If you want to share this post, or anything you’ve learned, on social media, please use #CFAwarenessMonth.)
Since there were so many, I’ll answer your questions in two parts, half of them today and the rest in a vlog tomorrow. Be sure to check back!
Let’s dive right in…
(As always, these answers are from my own personal experience with CF, and the information I’ve obtained on my journey living with this disease. Please don’t take any of what I say as advice or the only answer. Us CFers each have our own story and our own routine as prescribed by our care team. Thanks!)
Kristin asked: Is there pain with all the mucus in your chest? Does the VEST make the pain worse?
For those who aren’t familiar, the VEST is a form of airway clearance. Many CF patients are advised to do airway clearance on a daily basis to help break up the thick, sticky mucus from our lungs. (Some of the other forms are the Acapella, Flutter, or chest PT). I would describe any pain I feel in my chest as more of a tightness, often accompanied by lots of coughing. I find that the best way to get some relief is to do one of three things (or a combination): take a couple puffs from my inhaler, do airway clearance, or go for a walk/run. (And if it persists I call my doctor.) The VEST doesn’t necessarily make the tightness worse, although I might cough more which can be draining – BUT I know that it will ultimately make me feel better.
For the past few years, I’ve been almost exclusively using my Acapella to perform airway clearance because the VEST I have is the one I received when I was first diagnosed – 12 years ago. It’s HUGE, and very difficult for me to move on my own. Luckily, I was able to receive a new one just last week. I’m excited to get back to using the VEST and see if I notice any improvement. Below is a picture of the old VEST (left) and the new one (right). What a difference!
(May is also Lupus Awareness Month, which Kristin writes about on her blog, Working Lupie. Head on over to learn more about living with lupus.)
Mandi asked: Are you able to have children when you have CF? Are there precautions you need to take in order to have a baby?
Great question, Mandi! And one I get a LOT. 97% of men with CF are infertile but not sterile, so they can have children with medical assistance. For women it varies – some may have difficulties with fertility due to thickened cervical mucus. However, deciding whether or not to have children is a very personal decision – and something I’ve wanted to talk about for a long time. There are many things to take into consideration, both before getting pregnant and after. It’s been an evolving (and complicated) conversation for me and Mike over the past few years, and I think I’ll be ready to write about it here soon!
Kate asked: Are there exercise or other natural things you can do to lessen the symptoms of CF?
Exercise is important for everyone, but especially for people with cystic fibrosis. According to the Cystic Fibrosis Foundation’s website, “Regular exercise can improve your ability to get mucus out of your airways and out of your body.” I’ve tried to get into running in the past (I ran my first – and so far, only – 5k a couple years ago) but haven’t been bitten by the running bug yet. But I’m not giving up! After the craziness of this past year, exercise took a backseat and I’m determined to make it a priority now that I have more time. In fact, I’m signing up for the Baltimore Women’s Classic 5k at the end of June and hope to run in next year’s Sole of the City 10k. (Any training tips, songs that pump you up, etc. are welcome!)
I also get acupuncture every other week, which I’ve found greatly helps with my stress level and boosts my immune system, helping me avoid pesky colds that can be detrimental to those with CF.
Katie asked: How do you draw a balance between being a champion for your disease and trying not to be defined by your disease?
This question resonates with me because it’s something I continue to struggle with. I talk a lot on here about the fine line between living with CF and living into it. The more involved I get in advocacy, the more I know it’s what I was put on this earth to do. But when I spend so much time talking about CF, it can be easy to ignore the other parts of me. If I’m ever feeling CF overload, I let myself take a step back. That might mean reading a book, writing about things not related to CF, going out to dinner with my husband, or getting together with a good friend to talk about life.
Yesterday, a member of the CF community that I’ve come to really admire, put it perfectly: “CF awareness is about spreading our message to help make the rest of our lives (the parts that have nothing to do with CF) possible. Spend a few minutes whenever you can thinking about the you who is NOT a CF patient – who is instead a person, who just so happens to have cystic fibrosis. And make sure that you, and all those around you, are “aware” of that person as well.”
Check back tomorrow for a vlog with the answers to the rest of your questions. And if you have any more, or want me to elaborate on things I’ve said here today, please let me know in the comments!
From A to Pink | A Blog by Katharine Scrivener 