Question from a reader: Why Parents?

Ever so often, I like to share questions from readers and my answer to them here on the blog. This particular question I get asked quite often, so I figured I would share my answer with all of you.

You seem to direct a lot of your "messages" to parent's of CFers, is there any particular reason why?

So I guess I’ll first talk a bit about why I’m so passionate about CF parents. I truly believe that everything starts with the parents and the sooner we can deliver a message of hope, proactivity and confidence as well as messages like "treat your CF child like you would any other non-CF child" the sooner we can start to shape that child's experience of CF. The sooner we can get parents to buy into that I think, ultimately, the healthier our community will be and that’s what we all want.

I’ve been fortunate in that I've been able to meet so many parents and CFers within the CF community. It is my experience that 99/100 times the child’s attitude toward cystic fibrosis is a 100% true reflection of the parents attitude toward cystic fibrosis. What I mean by that is I have met parents who are very bitter, angry and play the role of the victim very well and wouldn't you know it, I then meet their son or daughter and they are the exact same way. I can tell you as a patient that when you fall into the trap of being a victim or being bitter and angry, unless you are able to harness that into a positive reaction (which most people simply can’t do), it’s very hard to have the energy to really live your life. A pessimistic attitude and a victim's mentality will more likely than not affect your health in a negative way. This isn't just my opinion either, research is constantly coming out that supports this "theory".

Let me give you a real example of this. I was reading through a study a couple of days ago that showed those in the CF community who felt like they were in control of their disease were more likely to exercise. We can debate what came first, the chicken or the egg all day, but I know that this has a direct correlation in my life. One reason I exercise the way that I do is because I truly believe that it has a positive effect on my health and my lung function. When I exercise and do my treatments regularly I feel better and my lung function remains steady (I'll take anything but down!) or goes up. Conversely, when I slack on exercise or treatments, I feel worse and my lung function goes down. Can you see how this can make me feel like I have some control over this disease? Of course my question would be, is it just a feeling or am I actually exhibiting some control? In other words, am I just getting lucky? Like my "good friend" Larry Bird said, "Seems like the harder I work, the luckier I get".

You can call it ignorance or you can call me naive, but I would like to think that the proof is in the pudding. I’ve been sick at times, I’ve been really sick at times, but I never believed that I had lost control and I always believed that I could "get it back". When my doctors would say "this is probably your new baseline" it only motivated me to take a step back, assess what I could be doing better and then work harder going forward.

I really think that if we can get parents to buy into this way of thinking early on and ingrain this attitude, from a very early age into their children, some very positive things can happen. We do have some control over this. Things aren’t always going to go our way, but we have to make sure we wake up every single day and do everything we can to stay one step ahead of this disease. I can say without a shadow of a doubt that CF never takes a day off and so either can I.

I have such a heart for CF parents not only because of that initial shock of getting this diagnosis, but because of the first thing they do, Google it. I really want to change the message that they first find. When a parent newly diagnosed family Googles CF I don’t want them going to sites that are doom and gloom and depressing. I want them going to sites like Run, Sickboy, Run or CysticLife.org and be able to comb through those sites and say "hey there’s hope and we can do something about this". From that point on I would expect them to realize that there are great meds out there and great plans of action, which, if implemented and stuck with, can provide great results and excellent health.

So why do I really like to deliver my message to CF parents? Well, it's because I have a big heart for CF parents and I love the CF community and want all of us to be as healthy as possible, and whether the parents like it or not, it starts with them. No pressure :)

28 years old and one regret. Not bad.

by Michelle Matta

When Ronnie asked me to do a guest post I was excited to do it immediately. I have a lot of disability-paid hours to spare, tons of time during treatments for my 24% lungs, and a mind that needs a break from anticipating a call that is coming anytime. A call to tell me whether the doctors think its time to list for transplant following the assessment I did 3 weeks ago.

The delay in my post-writing was a combined result of the stresses of waiting for that fateful call, and the urgent desire to find a way to convince anyone out there to avoid my fate at all costs.

I had 80% lung function until I was 19 years old. No admissions until I was 23. In the years from 19 to 23, I lost 40% of my lung function, and I didn’t smoke or do drugs at all, or drink or date much. It was a direct result of a lifetime of little to no physio, and putting life before CF always. University, part-time jobs, socializing, everything typical of a young adult. I saw my numbers fall at clinic and forcefully proclaimed that I felt “fine”. Which was true, until I went below 50%.

I want you all to consider that you may have things going on right now that feel really important. Maybe you go to school, maybe you work, or both. Maybe you like going dancing all weekend and find it hard to squeeze in treatments. Whatever it is, take a moment to live slower. Physio is not as time-consuming as it feels. Spend 15-30 mins on facebook with your vest on. Watch your favourite show with the flutter in your mouth. Get a puppy and take him for a run every day. You’ve heard it all before, but trust me, the way it feels to wonder if you could’ve helped yourself have just 10% more lung function is too difficult to explain. 10% that could’ve meant pursuing surrogacy with my husband and having a baby on the way instead of living in the limbo of pre-transplant. 10% that would mean no oxygen concentrator chugging at night, or beside you in the mall, or preventing thoughts of winter trips to Florida. Maybe even 10% that would’ve let you be healthy enough for the most fabulous drug trial to stabilize your pft’s and save you from transplant entirely. It’s possible. It’s not about saving yourself from CF, its about making your life better. Just the little bit that you have the power to control, means a complete difference in your future at 25, 30, 35, and beyond.

And that university load that’s holding you back? That job you’re always stuck overtiming at? You know what happens to them? They become a terrible math equation. My 4 years at university bought me only two and a half years at my job before I had to stop working. Please remember that slow and steady wins the race, and unfortunately with CF, our best bet is to sometimes compromise living so busily in order to make it to the next step with good health.

If only I had known that my dreams would come true, and I would fall madly in love and ache for the rest of my fairytale. I would’ve never EVER missed a single physio session or chance at exercising. If only I had known that feeling fine is not enough. That’s my one regret.

Note from Ronnie: Thank you SO MUCH Michelle for taking the time to write this pointed and powerful guest blog. I've had the opportunity to share various emails with you and one thing is for sure, your desire to help others is very clear. You explicitly said to me "I hope my story helps someone out there". Well Michelle, I can guarantee you that this will help more than one. Sometimes, sharing our one regret can be more powerful than sharing our many accomplishments. Thank you.