Skip to main content

Check up and a Challenge

I had a CF check up today to make sure I'm recovering nicely from my disastrous Christmas break. And guess what?! My pulmonary function test result was 2.0 liters (65% lung capacity). That's the first time my PFTs have been that high since October of 2012! I know that PFTs are just a number and that they don't completely define how my health is doing, but boy does it feel good to see that 65% again. 

On a related note, my CF doctor told me today that I'm a superstar, and my picture should go on the clinic's wall because I am so on top of my health. I have always been compliant with my treatments and therapies, which is why I have stayed relatively stable the past 21 years. I know that even when I am compliant, I don't have full control over my health; I could be doing everything I'm supposed to and still decline in lung function. However, I do not understand why or how some people with CF seem to just ignore their disease and refuse to do treatments and take pills. Seriously? You know that treatments and pills keep you healthy. You know that your lung function declines rapidly when you ignore much needed therapies, and when you're put in the hospital for three weeks and are forced to actually take care of yourself, your health "magically" improves. You know that after you get out of the hospital and your PFTs jump 20-30%, you feel significantly better and can function in society. Why then do you decide to let yourself get so sick when you know if you just take care of yourself, your quality of life will most likely improve drastically? Reality check-ignoring your CF does NOT make it go away. As annoying as it is to stay on top of everything you have to do for your health, wouldn't you rather be able to breathe? Wouldn't you rather not suffer severe lung exacerbations because of your own inability to take care of yourself? Wouldn't you like to go to school and have a core group of friends and meet new people and simply enjoy life for as long as you can? I know CF is rough. I know being compliant can be hard when no one understands what you're going through. I know it's frustrating when you're taking care of yourself but seem to decline. I'm not denying any of that. However, I am saying that you have no excuse for refusing to care of your body. Do your treatments. Take your daily intake of pills. Go in the hospital when necessary. Stay up to date on CF research. Please, for your own sake, don't let the disease consume your every thought, but be aware of its effects on your body. You are so valuable. Let that value show by the way you treat your body and care for its needs. 


Popular posts from this blog

CF Walk Letter 2018

Dear friends and family,
I hope this letter finds you doing well! My life looks pretty different this year from last year. In May, I graduated with my master’s in communication sciences and disorders. I started working as a speech-language pathologist in June for a company called SpeechCare, and in July, Eric and I got married. That was a very busy couple months! I love my job; I work mainly with adults with intellectual and/or social disabilities to help improve their communication skills. My clients bring me so much joy! I love being able to help them communicate better with others. Eric and I are also loving being married. Living with Cystic Fibrosis has taught us to never take the time we’re given for granted, and we are making sure we soak up all the moments we’re given and go on plenty of fun adventures. 
My health has been a bit of a struggle in the past few years. I had a round of IV antibiotics in May and then again in September and January. I will be starting IVs within the ne…

The day that was yesterday

Wow. What a day yesterday was. Here’s what happened:
At around 4:45, my hand became numb and tingly. Because I’m a knowledgeable SLP, my first thought was “oh my gosh I’m having a stroke”. Although the numbness was my first (and only) symptom, it was so bizarre how my hand just all of a sudden lost feeling in it. About 5-7 minutes into the numbness sensation, it started traveling up my arm and reached about midway up my forearm. Due to my history of a PE and being on Amicar (a blood clotter) right now because of a lung bleed, pretty much the only option was to go to the ER. I called CF clinic, and they confirmed that I should head over there. The ER is the most disgusting place, especially in the middle of cold and flu season. They also apparently have never heard of CF protocol because I had to demand to be put back in a room immediately and for everyone who came in my room to be gowned, masked, and gloved. From the beginning to the end of the 5 hour ER stay, it was pretty disastrous.…

Thankful in the hard times

With a disease like cystic fibrosis, it can be easy to get lost in all the pain, fear, and frustrations and lose sight of what we have to be thankful for. This year has been rough. I started the year with a blood clot, quickly followed by increasing worry about the state of health care in America, all while losing a significant amount of lung function and dealing with way too many lung bleeds. However, no matter how hard the year, I believe it’s always important to reflect on the many blessings we have been given. It’s too easy to wallow in self-pity and pain otherwise. So this post is dedicated to just that—thanking God for all He has given me. 
I’m thankful for... My new husband ❤️. As I’ve said before, many CFers wonder if they will ever find someone who will choose to love them day in and day out with all the stresses that come with cystic fibrosis. Being the spouse of someone with CF is not for the weak or faint of heart. My husband has taken a crash course in medical terms, health…