Guest Post by Jessica Muir
My name is Jessica and I’m 29 years old with Cystic Fibrosis, diagnosed at 5 months of age. I went to college for 4 years and graduated with my degree in Nursing. I work full time as a RN at an outpatient surgery center. I’ve been married for 5 years and have 2 dogs. To sum it up, I like to live life to the fullest. I love to be surrounded by my friends and family. I have a major love of cooking, shopping, running, being outdoors, entertaining, laughing, positive thinking, and keeping an open mind.
I’m honored to have been asked to do a guest post. I’m thrilled to share my story with the CF community, and am hoping my story will touch someone else’s life. Also, a huge thank you to Ronnie, whose blog I follow daily, and whose story has inspired me as well.
I never really understood how important exercise is with CF. To be completely honest, I had no idea how beneficial it could be. I’ve always been compliant with my treatments and medications and thought that was it. That was the best I could do.
However that all changed this year when my husband and I decided to talk to the CF doctors about starting our family. Overall they gave us such positive words, clearance from the CF aspect, and tons of encouragement. The only thing that they reiterated was to have the best lung function possible. I thought to myself, what else can I really do? I do everything possible now and was happy with myself for that. I’ve always been considered “healthy.” Then they started to ask me how often I exercised. Uh, well how about not at all? I am embarrassed to say for one, I didn’t exercise, and two, never put the obvious together that exercise could mean better health, especially with CF.
That day in December 2008 at the doctors changed everything and opened up a whole new chapter for me. I was on a hunt for information and others with CF who could inspire me. I joined CF.com, CF2chat.com, searched for CF blogs, anything and everything possible on CF and pregnancy. I was even inspired to start my own blog. I had no idea that these amazing resources were out there for me!! It was a whole new world to me, and I don’t know what I would have done without this abundance of information. The people I’ve been able to meet along the way have changed my life forever.
I started to research forums, and ask questions on the CF sites about who exercised, including what they did, and how it affected them. I was blown away! How had I never done this before? Swimming was the best exercise people recommended, but I have no pool, so cardio plan B. was it for me. I started to run. That day I was so happy and must have had an endorphin rush. I quickly decided today was the day I’d start my exercising, and I went outside and ran a mile to start my program. I haven’t stopped since.
The forums and fellow CF patients then gave me the courage to really branch out and dig deeper to make the most of my clinic visits. I was grateful to be labeled as healthy by my CF team, but now that wasn’t enough. I wanted to be even better, and make myself the absolute healthiest I could be, especially since we were trying to start our family. I asked the doctors to actually explain FEV1/FVC. I’d always been happy with my #’s, but NOW I understood what they meant. It turns out, I wasn’t happy with them and I wanted to push further. Through my questioning we also agreed that Asthma plays a huge part in my lung function. Sometimes I was treated for just the CF when actually I was having a major Asthma exacerbation. Bottom line is I took control. I did it for me, my family, and hopefully soon a baby. I actually did become pregnant in March of 2009, unfortunately I miscarried in May. This has only pushed me harder to exercise, knowing that I want to achieve motherhood.
Aside from the daily routines of (Vest 30 minutes, Pulmozyme once daily, TOBI 2x a day every other month, Colistin 2x a day every other month, 5% Hypertonic saline once daily, Albuterol as needed, Ultrase MT 20 (5) with meals, Ursodiol 3x a day, Nexium daily, Zithromax daily, Prenatal vitamin daily, Zyrtec D daily, Singulair daily, Advair 2x a day, Flonase daily…… I started a running program.
I wanted to run a 5K, so I chose to follow the “Couch to 5K” program. I’m happy to say that after training for the 5K, I ran it October 4, 2009 and completed with a time of 39:03.
What I do now is, at least 4 days a week I run for a total of 24-30 minutes with a cool down. It ends up being about 2 miles or more, and I couldn’t be happier. I actually feel the difference in my lungs. Running has been the best thing I’ve done for my lungs, and I’m amazed at how great I feel.
I’ve also been lifting weights. I use 10 pound weights and do 3 sets of 15 repetitions of a variety of exercises, 3 days a week. I feel a difference, and feel that having stronger core muscles has been beneficial to my lung function.
I bought a home FEV1 monitor. I wasn’t sure about purchasing this at first. I was afraid I would obsess about it. When I thought about it, I’d rather know what my lungs are like and have better control over my health. So I purchased the monitor. I am so happy to have such a powerful tool at home. This way I don’t have to wait for a clinic visits every 3 months to know my lung function.
I’m happy to say that I’ve seen a steady increase in my lung function since I’ve been running and it feels wonderful!
August 2008: FEV1 1.67
January 2009: FEV1 1.72 (after starting running program 1 month prior)
July 2009: FEV1 1.84 (bought monitor)
August 2009: FEV1 1.86
September 2009: FEV1 1.90
October 2009: FEV1 2.00!!
I haven’t blown a 2.00 since June of 2006!
It’s been an amazing experience to see an increase in lung function. I will continue to run and strive to push myself to the limits. Let’s see how high that FEV1 can get!
Please feel free to follow me @ http://www.jess-m.blogspot.com
Note from Ronnie: I just wanted to give a big thank you to Jessica for writing an outstanding guest post for RSR. I have been following her blog for quite some time and her determination is quite an inspiration. She has shown just how much exercise and running can help our lung function. I encourage you to leave Jessica your encouraging comments as well as any questions you may have!
If you are interested in writing a guest post for RSR simply send me an email with a little bit about yourself and what you'd like to write about.
Posts
