Sunday, March 29, 2009

My Cystic Fibrosis "Circle of Life"

So what does my typical day look like? The best answer is: There is no typical day. Relying on typical is hard when battling this illness. The thing to keep in mind is that there are over 1200 mutations of the disease. That means there are over 1200 different ways in which CF can affect somebody. If you add-in other genetic traits as well as environments, you’re literally talking about millions of ways. So remember, this is MY average day. There are some CFers that have my battles times 100 and some CFers that have no complications besides the fact that they can’t father children. CF comes in all shapes and sizes, but here is what I would consider to be my “typical” day.

I never know how I’m going to feel in the morning. Often times, I cough all night long or make wheezing sounds (so I’m told). When this happens I never fall into a really deep sleep. Without the help of a sleeping med, I usually feel like I haven’t slept the night before. With a sleeping med, I have to devote a certain number of hours to sleep, or I feel groggy in the morning. Therefore, if I can’t take the med and devote those hours, I generally feel like I haven’t slept (or slept very little) that night. I then of course feel tired and sluggish throughout the day.

With that said, the first thing I do in the morning is either workout or my treatments. If I’m able to breathe without doing my treatments first, I like to open up my lungs prior to my treatments with exercise. After exercise, I do my treatments. Treatments include aerosolized medication, oral pills and manual airway clearance. The treatments can vary, but they always include, a medicine (aerosolized albuterol and atrovent) to open my airways and decrease inflammation, a medicine (aerosolized Pulmozyme) to thin out the mucus, and a device that I wear to shake my lungs and try to move the mucus around and out. There are times that I additionally do a medicine (aerosolized TOBI) that is an antibiotic to kill infection. I also take about 40 pills a day. Most of these pills are digestive enzymes (Ultrase MT 20) and the others are vitamins, antibiotics (Azithromycin), and an acid neutralizer (Protonix).

After my treatments I usually take a shower. I only mention this because often times while in the shower, I vomit. Depending how much coughing I did the night before, I will generally vomit out all of the mucus I coughed up during the night. I feel nauseated most mornings. If I ate late the night before, you guessed it, that comes up as well. Most CFers have a malfunctioning digestive system. This causes nausea, bloating, irregular stools, and an inability to get the proper nutrition out of the food we eat. You can’t tell by looking at me, but many CFers struggle to maintain a proper weight. I have been blessed to be able to call myself “obese”.

After the shower, it’s on to the activities of the day. For me, that includes blogging, volunteering, speaking engagements, and trying to be a blessing to others. There are times that I find it very hard to get out of the house and get going. CF forces me find a balance between taking care of myself and “living life”. There is no doubt, that if I did 10 treatments a day, I would be healthier. But what kind of life is that? Treatments require sitting down and being still. Would anybody choose to commit themselves to 8-10 hours of their day to treatments? Making yourself in some regards “a prisoner in your own home”. I know I wouldn’t. I do, however, try and commit myself to at least 3 treatments a day and usually 4. This is what my doctors recommend, so that is what I try to do. Do I always do three a day? Of course not. But writing for RunSickboyRun.com has also provided me less of an excuse not to do my treatments. I'm already sitting down typing; I might as well throw on my vest and stick a nebulizer in my mouth. As I get older, my maturity and my health tell me how important it is to be faithful with treatments.

I live my life to the fullest. When I’m not doing treatments, I try to be active. This affects my health in a positive way as well. The more I move, the more I cough. The more I cough, the more my mucus moves around. The more my mucus moves around, the more easily I can get it out of my lungs. The less that’s in my lungs, the less of a chance of inflammation and infection. Less inflammation and infection, the easier it is to breathe. The easier to breathe, the better I feel. Ah, the “CF Circle of Life”. It sounds easy doesn’t it? I wish it were that easy.

My CF "Circle of Life" also includes hospitalizations every 3-4 months. I am hospitalized 3-4 weeks at a time. I stay in the hospital about 80 days a year. That’s about 20% of my (and your) year. I don’t say this for pity. I never seek pity. I say this simply as a dose of my reality. I’ve never met someone who likes being in the hospital. I can’t say that I hate it because I know I need it. I want to continue to live an active life and sometimes that requires me to be "locked up in the joint". Every time I get out of the hospital I am at my peak in lung function (With the exception being my last stay, which I will get into at a later time). Over the course of the next three or four months my lung function makes a steady decline. It declines until I put a halt to it. The hospital is that halt.

See, I can’t live my life without taking good breaths. Sure, I can lie around and do activities that don’t require a whole lot of deep breathing. But that’s not what I was created to do. I was created to interact. I was created to bless others. I was created to stare CF in the face and tell him that today won’t be the day I am defeated. I make CF plan around my life, I don’t make plans around CF. For me, CF is a being that I am in constant competition with. I guarantee you this, I will win. I will beat CF. There is no doubt in my mind. The day I was born I signed a lease, provided by God, to live my life. At some point my lease will expire, but I guarantee I will go way over on the allotted miles.

5 people had something to say...:

sunshine rose said...

i totally understand that routine! i'm 31yrs old and i live in miami, fl. check out my blog and read my complaining. lol. the video of you and your girlfriend is awesome!! you guys are so cute. unfortunatley there are no real men in miami :( i blog about that tons!! haha. hope your doing great!!

CFlover said...

I love reading your post!
I was just sitting here being crabby due to the face that a CFer just passed.
When this happens I always get bummed as I find it hard to deny that M is on the same path.
After reading your post I feel better!! I always know theres a chance of a cure or even for God to heal you, M or anyone else for that matter but after reading your last little part it just clicked for me.
Thanks!! =D

RunSickboyRun.com said...

I'm so glad something I said actually clicked for you. It is humbling to know that I can possibly make a difference.

Remember, somebody else passing has absolutely nothing to do with M. He's his own man with his own disease. Treat it as such.

Ronnie

candi said...

I just love the way that you write... you really have a way with words. Great job!! Another thing that I wanted to add was that some cfers can have kids... there is a procedure that they can do to withdrawl your sperm surgically its been done to another cfer and he and his wife had tripletts due to the procedure! Just FYI.... take care of your self, oh and im 32yrs with cf and type1 diabetes.

Patti G. said...

My 4 year-old son has CF, I am so glad you are on here blogging about your life with CF, I hope my little guy can learn from your positive attitude :)
@pattisunshine