Monday, September 13, 2010

Karen's Lung Function Climb (49% to over 100%)!!

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.

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.