I thought I would re-post this question and response because it applies to so many of us...
Young Girl's Post:
Mods, feel free to move this, as I am a teenager, but I'm seeking advice that adults can help with. I have a feeling I've posted things like this before. In Jan, I was in the hospital, got a gtube..lungs went from 50% to 100%. Now, I am not sure..but I believe they are back at 50%. My weight has also dropped a few pounds because the machine was messing up. I don't know what to do with myself. I go into this cycle..hospital is great, but I don't do many of my meds at home. I can't keep doing this, I want to live a long life, and this isn't helping. I feel like crap, when I wake up I DREAD coughing because I know that I will be bringing a lot of stuff up..and many times I end up throwing up because of it. I have zero energy. I get out of breathe going up the stairs... At PE Thursday we I couldn't even run a full lap..I ran 1/4th, after that I felt horrible. What is wrong with me? Why does my mind not want to do these meds? I get so frustrated with myself..but I have no willpower.
My response:
I can't stress enough the importance to doing your treatments faithfully at your age. Believe me, we've all been there. I haven't met ONE CFer that is dying to do his or her treatments. I totally agree with previous posters that the future of CF is looking brighter by the day and although there may never be a cure, they WILL come up with a med that takes away many of the affects. The key is to keep your lungs healthy enough so when that day comes, you're lungs are somewhat normal. They've told me that I have a lot of scarring in different areas of my lung. That lung is gone and it's never coming back. Now my focus is to not let any more areas get scarred.
I agree with coming up with a routine. Maybe every morning you sit on your vest and do the nebs while doing something on the computer? Homework? Facebook? Myspace? Personal blog? Do you watch TV? Every time your show comes on, make it a habit to do your treatments while watching it.
I figure that anytime I sit down, I can be doing my treatments. Believe me, it wasn't this was when I was your age, but if I could turn back the clock and do it over again I would. I'm paying the price now, for my neglect in the past.
I really hope this helps and you can message me if you'd like to talk further.
Ronnie
Readers: What would your response have been?
Hey, This is my first time checking out your journey and may I say congrats on wanting to make a life change. I think your advice to the young girl was great and I wish someone would have said that to me when I was younger. Well done on being honest and real, but also positive. Good luck on accomplishing your goal!!
ReplyDeleteThat big of a change indicates that your lungs are still in pretty good shape, but the mucus and infection is taking over and cutting your potential lung function IN HALF.
ReplyDeleteRonnie's not kidding when he says we've all been there. Whether it's in high school, college, whatever, all CFers seem to go through a phase where it's tough to make ourselves do what we know we need to do. And the fact of the matter is that you're not going to be able to break this cycle until your brain comes to the conclusion that it's worth it to do the meds. It's like overcoming anything else: first step is to admit that there's a problem, second step is to WANT to fix it.
It sounds like you have a busy life now -- school, friends, extracurriculars, whatever. If you can do all of that on 50% lung function, imagine what you could do with 100%! Think of all the extra energy you would have to hang out with friends, or do physical activities, or just live your life. Would all that be worth an hour a day of slight discomfort while you do your treatments? I can tell you that I wish I still had that option.
I'm not going to say that being 100% compliant guarantees that you'll never get sick, because it doesn't. But it does put you in the best possible position to respond and bounce back when you get an infection, and it allows the periods between infections to be more fun, and hopefully last longer. Some people will claim preserving lung function is the goal, others say living as long as possible is what motivates them to do their treatments. For me, though, it has always been about making the MOST out of the life I have RIGHT NOW. I figure if CF is going to be unpredictable, then I don't want to waste a single day feeling worse than I have to! So if it's a choice between no treatment and less energy/more sickness now or doing treatments and having a really awesome day because of it, I'm going to choose the latter. And so on the next day, and the next, and the next, until treatments are just a normal part of life.
Good luck, and know that you're not alone in feeling confused and frustrated about this.
I hope this young woman in reading your comments, and I think you gave her some wonderful advice! I want to key in on one point she said, (paraphrasing) "I'm afraid to start coughing."- a lot of times, the truth is, doing treatments, coughing up stuff, getting out of breath in exercise, all of it- is painful, scary, and can even feel life-threatening. Even I am in a high stakes negotiation with my team about how many times per day I can do "forced coughing" maneuvers to bring up junk. It makes my 02 drop to the 60s and is very stressful on my body.
ReplyDeleteMy point: looking back, I realized that this fear of the pain and panic associated with coughing fits was causing me to avoid them AT ANY COST. There were times in my life when I would avoid ever exercising around other people (including walking to my car, walking to a meeting at work, or pushing myself in rehearsal.) There were times when I did not formally exercise at home for weeks because of my fear of coughing. There were time when I avoided my medicines because they would make me cough so hard. Sounds great- right? Get through each day and cough LESS?
The problem: Avoiding coughing and specifically the admittedly gross, sometimes painful, usually exhausting process of coughing up yuckies - it's like avoiding crying. You wait and you wait and you wait and then you stub your tow and cry your eyes out in front of all your friends! If you avoid coughing, your lungs will get swampier and swampier, until you will experience even worse coughing fits that you will not have any control over- which will feed your fear again.
I think it's important that you think about how you feel about coughing- if you need to be angry or sad about it- or just admit that it's freaking exhausting and plan to cough up your junk and take a nap- so that you can get to be more compliant.
I think this issue is one of the least talked about realities in CF, particularly for girls who are not as (bear with me here . . .) likely to feel normally spitting out goobers. Doctors don't even enjoy talking about it that much and very little patient education seems to focus on it in post-adolescence.
It's a gross, exhausting, unsexy, un-dainty, nasty, sad, thing.
But you gotta do it. Every day.
Love, CG