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Guest Post by Nicole
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.
