Blogger Challenge on CF progression & control

A fellow CF'er, Piper, wrote a blog about some questions someone asked her about the tx process & the worries of not being "good enough" to qualify for a transplant. She then offered a blog challenge on how we fell about CF progression & control of it.

* CF Control: the worlds biggest oxymoron.

Every case of CF is unique. Anyone can see that within the CF community & within my own family. All 3 of us kids have CF but there not much we have in common besides our diagnosis and mutation. Why did my sister cultured MAC, but my brother & I haven't. Why do I have no problem with my digestive system and pancreas, but my brother and sister do. How about me going into the hospital or doing at home IV's multiply times a year, where my brother and sister can go a year or more without needing more then oral antibiotics? CF is unpredictable. How can you control something that you can't predict?

A HUGE word within the CF community is compliance. So many people think that with compliance to your doctors every wish & word is the answer to our problems, but the reality of that is it's not even close! I do 3-4 treatments a day, never miss a pill, I'm staying active but I can't seem to stay off antibiotics for more then a month or so at a time. My sister does two treatments a day, does sports all year long for her high school but still cultured MAC & my brother well lets just say he's in the "rebellion stage" I think every CFer goes through where he'd rather not do a treatment and when he misses it doesn't bother him. Yet his numbers are pretty stable and still high. One of the most frustrating things for me is when I am being 100% compliant, but we can't seem to keep me healthy. As most of you know these last 11 months have been hard. I have had my port for about a year now and I have only had it flushed 4 times because it's been in use the rest of the time. Over the last 6 months I've only had about a month or 2 off all together from some sort of antibiotics. I've had a bronch that didn't give us the answers we were hoping for, spent time in the hospital on oxygen because my body wasn't producing enough of it's own & I had to withdraw from school because I was to sick to get down to campus.

Don't get me wrong, compliance is a HUGE part of our lives, but it doesn't solve everything. We still get sick, we still have mean ole bugs throwing parties in our lungs that just don't want to leave & sometimes don't ever leave once you culture them. Now this is starting to sound a little depressing. Yes, CF is a progressive disease meaning it will only get worse, but like I said CF is also unpredictable! No human knows how long they have on this beautiful earth & just because I have a chronic progressive disease doesn't mean I shouldn't plan to live to be 80 years old. I have dreams & hopes that I will work to accomplish till the day I die. I'm working on becoming a special education teacher. I go to church, and hang out with family. I have some of the most amazing friends. At one point I was living in an apartment 500 miles away from my family and doctors and I was doing great! I have plans to get married, have my own kids. Maybe I will even get to serve a mission with my husband one day. CF will never stop me from me dreaming & will definitely never stop me from doing everything in my power to accomplish those goals.

But with all that said I can't be naive. The life expectancy for someone with CF is only 37, but that means there are those who live older then that. Every year there are new meds & new discoveries helping us live longer and healthier lives. I think progression & control go hand in hand. We do all we can (being compliant) to slow the progression of CF & enjoy the lives we have, but we have to know that there is so much that's not in our control. I don't know if at my next appointment I am going to culture a resistant bug of some sort making lung infections harder to treat, I don't know if my next sugar test will show I have CFRD (CF related diabetes) heck maybe I will go my whole life never having CFRD or culturing a resistant bug. Nobody knows, but as long as I am doing everything in my power to stay healthy, helping those around my that are struggling , encouraging those who are doing great & am still working towards my dreams I know I am living a great life and not letting CF hold me back! At times I might be upset, I might break down and cry. There are lots of times I feel so discouraged, but why work so hard to stay healthy to let it hold you down and leave you feeling like less. If I am going to work as hard as I can to stay healthy I am also going to try my hardest to count my blessings and live an amazing life.

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Wanna participate in this blogger challenge? Here are the guidelines:

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.