Friday, August 17, 2012

What is CF?

A lot of people ask: "So, what is cf?" and they get the generic "Oh, it's a genetic.. blah, blah, blah." I think that response is great and informative, but I don't really always expect people to try to understand what it is and what it feels like to actually have Cystic Fibrosis.

Going along with the generic response, Cystic Fibrosis is a genetic disease that primarily affects the lungs and pancreas, clogging them with sticky, thick, mucus that requires extra care to prevent/rid infection, as well as pills and etc.. to properly digest food or vitamins.

Okay, now forgetting all of that and stripping it down to the rawest form.. what is cf and how does it feel to have it?

As a young child, I only mostly remember running around and getting stomach aches. I don't remember cf being that big of a challenge. I know my mom and dad were constantly on me to do my meds. and I almost always met them with an attitude. I know that I would get sick and THEN I would want to do treatments, but even then I was a feisty little thing. Anyway, so being younger, I always felt pretty normal, because I didn't exactly understand the gist of what was going on.

Getting older though, I started having more hospitalizations. There would be i.v. pokes, picc lines, port placements, feeding tube placements and bronchoscopies, etc.. Nearing hospitalization I would typically feel very short of breath. People describe having cf as normal people trying to breathe through a straw.

Here's a flyer I found with that comparison:

Getting short of breath makes it difficult to do everyday tasks that most people consider simple, such as washing hair, climbing stairs, doing laundry, walking, talking, and breathing.

It became a sign that when I would struggle to be able to take care of myself and would cough more frequently that I had an infection and it needed to be handled with i.v. antibiotics.

The thing with cf is that people cough, and they cough very frequently. Some people mistake a cf cough as a smoker's cough, and although some people with Cystic Fibrosis do smoke, many don't, because smoke is especially bad for cf lungs and, in my experience, seems to cause damage very quickly whenever I'm around it. My lungs feel like they close up into little raisins around smoke. I usually cough more frequently, and I generally get cold symptoms after I've been around it but I digress.

I am used to taking mountains of pills, shots, inhalers, inhaled solutions and doing my vest. It is not something I love to do, but I try to do it regularly. I still manage to get stomach aches, nausea, bloating, vomiting, coughing, headaches, pain, and shortness of breath no matter how healthy I am.

Many years ago during hospital stays I required oxygen to be able to breathe. At night I would have nurses come in and they would tell me to cough so that my oxygen would go back up. I remember struggling one night to breathe, even with oxygen, and I honestly thought I was going to die that night.

I've had many times where I've questioned whether I would make it through fevers and lung infections. I know that my body is capable of handling a lot based on what I've been through, but at the time, something so regular now, felt like it was going to be the end of my life.

As I write this I'm trying my best not to exaggerate, but to make it as clear as possible to those who do not have cf and want to know exactly what it's like. I know everyone has different experiences with this disease, but many of us have the same challenges.

Going into the hospital, I've always expected to get better. Over the years I've responded relatively well to antibiotics in a short time. A few days into my hospital stays I can breathe better, my fevers are gone, and I have more energy to spend on things I like to do, rather than things I have to do.

As time passes, I also feel like some hospital stays have become less effective and I don't usually have the patience to try oral antibiotics anymore, simply because they have not seemed to work. I've always expected to get better because it's what I've known, but I'm afraid for the days when I will struggle just to keep myself from getting worse.

CF is a progressive disease, meaning it usually gets worse as time goes on. Treatments, pills, i.v. antibiotics and the other medicine available to cf patients has been shown to prolong life. Sometimes the problem with antibiotics is that they can make you feel even sicker than you already are. Usually patients adjust to the symptoms, and most of the time, the benefits of ridding infection are greater than the risks. I hate throwing up (who doesn't?) but I'm learning to suck it up.

I throw up from taking antibiotics and I get nauseous from tube feedings. I lose my appetite when I am sick and have been known to rapidly lose weight, while I continue to hear from everyone how important it is for my weight to go up. While people may think they are encouraging me, it is often the opposite. I hear how skinny I am over and over and over again like I've never heard it before. I hear that I am lucky and it could be much worse, I could have Cancer.

People compare Cystic Fibrosis with Cancer quite frequently. There are obvious pros and cons to both, but they both suck in their own ways.

It hurts, to have cf and hear it belittled. There are times when it is great to be looked at as normal, but there are times when it is great for people to understand that everything isn't always okay. Sometimes despite greatest efforts, my actions do not make me feel any better and I get worse; It's the nature of this disease and I understand that.

The bottom line is, I want people to understand. Even if my face looks fine and my weight is stable, it doesn't mean that I am. Mentally, physically, and emotionally it is difficult to cope with having a terminal illness or caring for someone with one, whether you are their friend, family member, or partner. I have days where I feel good, and also like you, I have days where I feel bad. I very rarely have days where I feel great but nevertheless I try to be grateful. I know I do complain, but I try not to.

I have Cystic Fibrosis. I am just like you, except I cough more, I can't always breathe, and I have other medical needs. I cry, yell, smile and laugh. I can do just about everything that you can do, although I know when I need to limit myself. I know that there are some things I can't and won't ever be able to do because of cf, but I'm trying to focus on the things that I can. I like to go out and have fun. I like to be normal and I try to make life as normal as possible despite having cf. Cf influences the decisions I make and to an extent, the journeys it has taken me on have molded me into who I am today. I am not a perfect patient, daughter or friend; having this disease does not make me equipped to be a superhero or superhuman. I am just a person. I have Cystic Fibrosis.. and I am just like you.