Friday, September 17, 2010
Thursday, September 16, 2010
Tuesday, September 14, 2010
Monday, September 13, 2010
Guest post by Karen Vega
I want to start out by thanking Ronnie for inviting me share my story by guest posting on his blog. My name is Karen, I’m 29 years old and have 1 ½ year old twin boys. I’ve shocked quite a few people, myself and doctors included on my drastic increase (75% increase in volume) in PFT’s over the past 10 months. Here’s a quick background on me and what brought about the change.
Up until college I always had “mild” CF. I’ll admit that I wasn’t the best at being compliant with my therapies during high school, college and even beyond. I just wanted to live “normal” and CF was easy for me to ignore at that time in my life. It wasn’t until late in college that I felt my CF slowly progressing and I needed IV’s for the first time. After I graduated and entered the workforce I wound up on IV’s every 6-8 months. My PFT’s were decreasing and I just accepted that this was the progression of the disease. When my husband and I decided it was time to start a family I talked with my doctors who gave me the o.k., had a tune up and at that time was holding steady with a FVC 3.67L (88%) and FEV1 - 2.54L (72%). To everyone’s shock & surprise I found out I was having twins (although they are in the family I just never thought about it), which scared a lot of people, my doctors mostly, but overall I had a pretty normal / easy pregnancy. I did wind up with an exacerbation at the end of my pregnancy and as soon as the boys were born I was on IV’s again.
I had a really rough first few months with them at home. Besides the normal new mom of two tiredness, I had the flu, kidney stones and laryngitis all in an 8 month period. My PFT’s plummeted to an all time low FVC 2.50L (64%) and FEV1 1.56L 49%. This really scared me and I knew something (me) had to change drastically. I had to find the energy and time to really commit to bringing those numbers back up. I knew I had to start exercising my lungs. I started slow, swimming 2-3 times a week. It took me about a month or two to get back into enough shape to even swim ¼ mile without getting winded. Then I started light jogging and 4 months into it I was up to a mile of jogging and ½ mile in the pool. After another round of IV’s last December (and let me add a PICC and two 1 year olds does not mix) I was starting to feel much more energized. I saw a post from Jerry Cahill about joining Team Boomer for this year’s ING NYC Marathon and I impulsively signed up. This was the kick in the butt that I needed.
I’ve been training for the Marathon since April, 5 months now. I’m up to running 28-30 miles a week with my longest run so far of 13 miles. I don’t run straight though, I take walking breaks usually every 2.5 miles or when I feel I need to. It’s not the speed that matters to me, it’s the distance and endurance. I never, ever thought I would be doing this a year ago.
Three weeks ago I had a clinic appointment and my PFT’s were FVC 5.36L (129%) and FEV1 3.71L (106%)! I couldn’t believe it. I still can’t believe it. I haven’t been in the 100%’s since as far back as I can remember. My doctor said she’s never seen results like this and that I must have a tremendous lung reserve. I haven’t changed any medications and haven’t been on antibiotics since December. The only thing that changed was me starting to run, run a lot.
Exercising was always something I had an excuse not to do. But after actually seeing my results I don’t have anymore excuses. Now I’m not saying everyone should go out and run a marathon nor do I think my results are typical. But I do think that everyone, CFers especially, would benefit from any type of physical exercise to the lungs. No matter how slow or how many breaks you need there is such a sense of accomplishment at the end.
I recently started a blog mostly about my training but about my life in general. Check it out the post I’ll be writing on Sunday 9/12 after I finish a 15 mile run! And make sure to check back after Nov 7th… after I complete the marathon!
And if you are able, please check out my First Giving Page for the NYC Marathon. http://www.firstgiving.com/karenvega
Thank you all for taking the time to read my story. Wish me luck on Nov 7th!
Note from Ronnie: I just wanted to give a big thank you to Karen for writing an outstanding guest post for RSBR. Her story reminds me a lot of my own. She is a great example of a CFer who decided that "enough was enough" and to take CF head-on. She has shown that although it may take some changes, through a little bit of hard work and dedication, we CAN have some control over this disease. I encourage you to leave Karen your encouraging comments as well as any questions you may have!
If you are interested in writing a guest post for RSBR, simply send me an email with a little bit about yourself and what you'd like to write about.