Sunday, February 7, 2010

What I Did to Increase My Lung Function

Guest Post by Nicole

Hi everyone! After reading my blog (link to http://niki36.blogspot.com/) and seeing how I greatly increased my PFT’s in one month‘s time, Ronnie asked me to write about how I did it. RSBR is so inspiring and gives so much motivation to CFers, that of course I was honored. So thanks, Ronnie, for this opportunity!

Now, when I sat down to write this, the first thing I thought of was “well, of course, medications are the reason why my lung function went up.” That is true...in part. In addition to my normal daily routine, over the last few weeks I have been taking Singulair, Augmentin, 7% hypertonic saline and Tobi (because it is my “on” month). It is possible that this combination had some miracle powers to it, but I have a slightly different theory.

One month ago, my FEV1 was 35% and my FVC was 48%…the lowest I ever remember my numbers being in recent years. This. Scared. Me. I started on the above routine, but most of all, I stuck with it. Compliance is key in cystic fibrosis. I have always been pretty good about treatments and pills, which I believe has kept me healthy this far. That being said, it has only been the past 6 months or so that I’ve done Tobi like I should and this is the first time I’ve stuck with the hypertonic saline. It is a pain in the ass to sit for treatments that last over 3 hours a day. There are plenty of other ways I’d like to spend my time. But this improvement made me see that it is worth it. Yesterday my FEV1 was 51% and my FVC was 73%. My goal now is to get my FEV1 in at least the 60’s and my FVC in the 80’s. I will continue my compliance with medications and I am going to start an exercise routine because I know, as do all of you who read RSBR, that makes a difference.

Now, I know there are many CFers that feel like they can’t improve their PFT numbers; that once their numbers drop that is their new baseline. Well, I don’t believe that is true. I think that with medications, compliance, and exercise it is very possible to achieve greater lung function. I challenge you to give it a try, push yourself and in a couple months you WILL see a difference. It is so worth it. The couple hours a day of treatments can add years to your life.

There is one more thing I would like to talk about and that is asthma and allergies in CF patients. A month ago, when my numbers were so low, I felt short of breath and had a tightness that just wouldn’t go away. That is when I added the Singulair, which I had taken during Spring allergies earlier this year. I must say that I think it made a HUGE difference. This Fall season is hard on a lot of us and I encourage you to look into different treatments for those symptoms. My doctor also told me to start taking Zyrtec to see if that helps me even further. Sometimes we are so busy treating CF that we forget about other underlying issues. It is very common for people with CF to also have asthma -if you have wheezing, shortness of breath, or tightness talk to your doctor and see if asthma or allergy medication may be beneficial to you. I felt like nothing was going to make me feel better, and who knew one little pill would do so much?

I hope that you find inspiration (whether from my post, RSBR or from another amazing CFer) to give it a try and take charge of your life. You CAN improve your situation and I’d love to hear how you do it!


Bio:

My name is Nicole and I am 25 years old. I was diagnosed with CF at age 2 and with CFRD at age 13. I am an Army wife and have been married to my wonderful husband Rob for 3 years. We are originally from NY, currently stationed in NC and will soon be moving to GA. I enjoy traveling, cooking, and spoiling my furbaby Brooklyn - a 3 year old rottie rescue. My next goal in life is to overcome infertility and experience the joys of motherhood.

Note from Ronnie: I just wanted to give a big thank you to Nicole for writing an outstanding guest post for RSR. She is a great example of a CFer who decided that she could do more to manage her disease and then acted upon it. 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 Nicole 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.

Comments (7)

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I like the idea of occasional guest posts. Thanks Nicole for sharing your story. It's nice to know, by way of stories like this, that positive results can be achieved through intentional efforts.
1 reply · active less than 1 minute ago
You're welcome! I hope that by sharing my story I can inspire others to take control and make the most out of life =)

~nicole
Congrats on the improvement! I like the guest post idea too. Very nice. :)
I hear you about 3 hours plus on doing nebs. I JUST started The TRIO, AKA eflow and let me tell you, not only did it change my life in terms of it takes only minutes to neb a drug but I FEEL better and my PFT went up from FEV 1 of 63% to 67%. I highly recommend The TRIO. Thanks for the post!
I am 35 years old and was diagnosed with CF at 20. I am married and have an amazing 3 year old son. Nicole, it took me some time to get pregnant but when I did my doctors told me that hormones worked wonders because I had an awesome and healthy pregnancy. I have been fighting mycobacterium for several years now. My FEV1 was 87% until recently. I dropped to 76% due to pseudomonas but I began running at the gym and in less then 2 weeks brought it up to 80% and I will continue to bring myself back to health. Exercise and lung clearance are key. And I, like Ronnie, have only recently become compliant with my pulmozyme and even my vest and I am finding that I feel better when I do them! Good luck to you Nicole & all CFers!!
1 reply · active 554 weeks ago
Great job Monica!!

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