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 Eric’s Perspective:

Most chronic, invisible diseases are like an iceberg. Even once you think you’ve got a complete picture of the shape of the monster, you haven’t seen the largest, scariest part. CF isn’t something that just flares up sometimes and lets you live your life the rest of the time; it’s also not something that can be solved by living a healthy lifestyle. Some CFers may prolong the inevitable through exercise, organic veggies, and meditation—but regardless, the disease will have its day. There’s no beating CF, no remission, no prevention, no cure. It seeps into every second of every day of your life and dictates every decision you make, from work to relationships and everything in between.

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If you’re lucky enough to find yourself in a supportive relationship as a CF patient, you’ll see that your disease drives most of the major decisions you make as a couple. You and your partner will make decisions about jobs, money, home, children, pets, vacation, and just about everything else by accounting for CF. 

Love is a precious and unexpected gift in the midst of the CF trials. Knowing you aren’t alone makes all the difference in the world. And when the right person comes along, they not only give you a reason to fight all the harder but help you with all of the many everyday tasks required to stay healthy and breathing. I was blessed to find Marissa, an unbelievable loving, caring, prepared woman who carries my heart, gives me hope, and takes care of me when I need the extra help.

Though it may seem impossible, CF has a positive influence. You learn to ignore the unimportant stuff and the judgment of “successful” couples and let go of visions of a “perfect” family. All of the decisions that other couples make easily become major turning points for a couple affected by CF, so we put a lot of thought, planning, communication, and sharing into our choices. Honesty is a given because a lot of simple things can be life or death.

You spend a lot more time together than many young couples, because of a) you’re stuck in one place doing treatments/at the hospital/tethered to your oxygen, and b) you’ve learned to truly appreciate the time you have together.

Every day is a reminder of life’s fragility, between the infections, hemoptysis, and gasping for air during vicious coughing spells. Having to consider the implications of an incurable fatal disease also forces you to recognize and be grateful for the time you have together.

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“Love is a precious and unexpected gift in the midst of the CF trials. Knowing you aren’t alone makes all the difference in the world.”Eric

BREATHE

May 8, 2017 — Leave a comment

IMG_8923INHALEEXHALE, now again INHALEEXHALE, and REPEAT, it’s easier said than done for some. Breathing is an involuntary act which most people do not think about and take for granted. To someone with Cystic Fibrosis that breath you just took would be a gift!

Many people have asked me what’s it like living with Cystic Fibrosis, does it “Hurt”? I’ve never given a clear answer as there isn’t one. I can describe what Cystic Fibrosis is to me, or how it feels like to me. But you should know, there isn’t just one kind of CF gene there are over 1,900 different types of mutations of the gene. Some are common and others are rare and found only in a few people. Certain types of are associated with different symptoms of the disease. For example, some mutations are more likely to affect the gastrointestinal tract than the lungs. However, knowing an individual’s CF mutation cannot tell you how severe that person’s CF symptoms will be.

If you’re new to the scene of Cystic Fibrosis let me enlighten you:

Cystic fibrosis is a serious genetic condition that causes severe damage to the respiratory and digestive systems. This damage often results from a buildup of thick, sticky mucus in the organs. The most commonly affected organs include the lungs, pancreas, liver, and intestines.

Cystic fibrosis affects the cells that produce sweat, mucus, and digestive enzymes. Normally, these secreted fluids are thin and smooth like olive oil. They lubricate various organs and tissues, preventing them from getting too dry or infected. In people with cystic fibrosis, however, a faulty gene causes the fluids to become thick and sticky. Instead of acting as a lubricant, the fluids clog the ducts, tubes, and passageways in the body. This can lead to life-threatening problems, including infections, respiratory failure, and malnutrition.

In my case, the mutation I have has affected my respiratory system, nose, hands/feet, brain, reproductive system, bones, pancreas, kidneys, gastrointestinal tract, and exocrine glands. So to make it clear CF doesn’t just affect your lungs, it can have an effect on the entire body. In other words, Cystic Fibrosis is a drawing of the straw kind of life.

May is Cystic Fibrosis Awareness Month!                                              

Throughout the next few posts, we will journey into the cause and effects CF can have on the body and personal life. Be sure to check back in this month for more interesting posting regarding Cystic Fibrosis.

But first, let’s try an experiment a challenge if you want to call it that. This simple exercise will give you a feeling of what it’s like to breathe like me or someone with CF.

The Challenge: Obviously it is very difficult to experience the full range of problems encountered by people living with CF, like chronic shortness of breathconstant coughing, and debilitating fatigue. It is not actually straightforward for most people with CF as the build-up of mucus in the lungs means that less oxygen is available, which causes problems with breathing normally. However, by breathing through a narrow straw, you can get some sense of what it feels like with reduced lung function. This is amplified during intense moments when breathing is a struggle such as a heavy coughing fit. There is no way for anyone to know what it truly feels like to be another person, this is one of the closer experiments to experience what it’s like to breathe as someone with CF. It’s very simple to do and there are only a few steps.

WARNING: At any time you feel light headed or extreme discomfort, STOP! 

  1. Find a medium sized drinking straw, something you would find at most restaurants/bars the longer the better, not a straw that has a larger diameter. The effect will not be as intense.

  2. Stick the straw between your lips (make sure there is a good seal around the straw and your lips), plug your nose and breathe through the straw for 60 seconds.

Several seconds in you might not think it’s so bad, but then around the 25-30 second mark, you begin to consciously think about the lack of air pouring into your lungs. Around the 35-second mark, you wonder if it’s almost over. By 60 seconds your lungs are beginning to panic a bit and your brain is screaming that you should release your lips from the straw. People with CF don’t get to stop; it’s why each breath seems so important/valuable. There can be days it feels like it takes everything just to breathe but instead of panicking we have to move forward and remind ourselves to breathe.

Describe in one word how it felt to breathe through the straw, now challenge your friends.

With that one word, I welcome you to post your response of the straw experiment please take photos of you and your friends during this moment and post on your social media account allowing others to be educated of your experience. Use the hashtags #strawchallenge #cysticfibrosisawareness #fight2breathe #Cysticfibrosis  #CF

Now imagine having to cope with that feeling when you are climbing the stairs, running for a bus or in the case of a child, just trying to keep up with your friends while you play.

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If you didn’t find it challenging enough, try climbing a flight of stairs, walk around the room for a while, include some kind of everyday activity, jogging in place for a minute. All while breathing through the straw with your nose pinched.

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Meet Devin Featherstone, Devin is a good friend that has been doing his part with Cystic Fibrosis Awareness. He accepted the straw challenge while hiking up in the mountains. Take his word for it”This Sucks”!

The straw challenge probably is the closest activity to experience what it’s like to breathe and live ith CF. Breathing isn’t the only challenge we CFer’s have to face and live with. There’s depressionanxietyscene of lonelinessstress,  painbad cough,  infections,  medical treatments, and nutrition just to mention a few.

I’ve experienced my challenges with all of the above symptoms. I have faced some really difficult times living with CF. Even though they may seem like dark times at the moment, I try and look at them from a positive point of view and transform them into lessons. Some may leave scars; scars are but evidence of life, scars are not signs of weakness, they are signs of survival and endurance that we have fought for something we wanted in life; LIFE IT”S SELF. I’ve started to learn to use my scars to educate others that there are ways to heal, to live, bring awareness.

Through the completion of each survival, I gain a lesson that I hope to educate others with.

I’ve walked in the darkness so that others may see the light.

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