Poems

My Lungs Are Made For Breathing

I was lying in bed a few nights ago, when a random idea managed to make its way through my tunnel of thoughts. My mind wanders a lot before bedtime. Sometimes of memories, books I’ve read, shows I’ve watched, or what I want to eat the next day. I seem to always formulate my best concepts during the early hours of the morning. I’m a night owl.

That particular night I was disappointed at my myself for disposing a poem I wrote a few years ago. I thought it was lousily written, so I crumbled it, and tossed it away, over a year ago. I sat in bed, staring at the wall, desperately trying to remember what I had written. All I managed to recall was that it was about breathing with new lungs. I sighed heavily, thinking, Oh well, I can write a new poem. Then, suddenly I came up with the title, my lungs are made for breathing. Anyone who suffers from cystic fibrosis knows our lungs simply suck at being lungs. Our lungs are definitely not made for breathing well, but new transplanted lungs is a different story.

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Personal Blog

The Gift of Sound: Part 2

Conclusion from The Gift of Sound: Part 1

The Start of Something New

Fast forward to October 31, 2008. It had been over a year since I had my transplants. I was doing well. I wasn’t suffering from any complications. Living happily and healthy as could be. I was finally able to schedule an appointment and qualification testing for cochlear implant surgery. Five years before, this surgery was not an option, because I was too sick to undergo anesthesia.

Cochlear Implant

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Personal Blog

The Gift of Sound: Part 1

The Gift of Sound is dedicated to my dad, who’s love shines brighter than the sun.

During this time of year everyone has their minds on cooler weather, fall festivals, pumpkin spice, horror movies, haunted houses, and halloween parties. While I enjoy some of these as well, I always reminisce about the year 2008. October 31 to be exact, and no, not because of Halloween. I lost my sense of sound and became deaf when I was just eleven years old. I gained it back five years later. This is my journey.

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Interviews

A Conversation with Gunnar Esiason

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I want the younger generation to know cystic fibrosis isn’t a death sentence. Your life is what you make it, especially with lung disease. If you want to be sad, then be sad. If you want to be happy, then be happy. There is no excuse not to smile or praise God for our lives. Gunnar proves we can accomplish our dreams, despite our unusual and unfortunate circumstances. So, lets listen!

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Who is Gunnar Esiason?

Gunnar is the son of retired American NFL quarterback, Norman (Boomer) Esiason. He is twenty-six years old and living with Cystic Fibrosis. He is currently the director of the patient advocate program at the Boomer Esiason Foundation in Garden City, New York. Their mission is to heighten awareness, education and quality of life for those affected by cystic fibrosis, while providing financial support to research aimed at finding a cure.

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Personal Blog

Women & Living with Cystic Fibrosis

Living with cystic fibrosis my whole life hasn’t been an easy road traveled, that’s for sure. Today, I’m here to share a whole other set of issues I struggle with on a daily basis, as a woman living with CF. These are my honest and sincere feelings. This post was definitely challenging and even uncomfortable to write at certain points, but if I can help at least one woman, then its all worth it.

Career & Making a Living

I missed a lot of school, due to being sick for several years; I barely made it to my high school graduation. After such a stressful year, trying to pass several tests, the last thing on my mind was applying for college, which raised an important question; did I really want to go to college? What if I made it through college and couldn’t maintain a job afterwards. I never know when I’m going to have a bad day. My stomach issues could flare up; my blood sugar could be too high or low or I could be just plain tired, which seems to be happening a lot lately. I have a consultation scheduled next month with the sleep study clinic. Just another appointment added to my calendar full of them.

If I attended college, how on earth would I pay back my student loans? Did I want to risk being far into debt, with no way to pay it back? My short answer was, no. I decided college wasn’t the best choice for me. I qualify for disability checks, but it’s barely enough to pay less than half the rent, food and necessities. Not to mention, a cell phone bill that I can’t live without!

Office jobs are best for those living with CF. You get to sit in a nice air conditioned space, you can take your medications and do breathing treatments right at your desk.

I’m thankful for my creative talents that have allowed me make a few bucks over the past few years. I’ve sold several pieces of jewelry and during the holidays, sets of Christmas cards. I enjoy creating projects for others, but I’m always pondering, Is this good enough to sell?

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Personal Blog

Celebrating 10 Years with my New Kidney

Today is yet another big milestone in this wonderful blessed life of mine. I’m celebrating ten years of living with my transplanted kidney from my very own mother. My kidney function began slowly declining shortly before my lung transplant in two thousand seven. Doctor’s told me, it was likely I would need a kidney transplant, sometime after receiving lungs. What they didn’t know, is just how soon after I actually needed a kidney. Due to the high doses of anti-rejection medication, following my lung transplant, my kidney function quickly declined drastically and I needed dialysis right almost right away. I went to Cincinnati Children’s hospital for dialysis three times a week for three hours. A short time later, my mom went through several tests and imaging procedures. She was a perfect match! On July second two thousand seven, my life was saved for the second time. Only this time, instead of a stranger, it was my mom! After all the pain and suffering I endured for 5 years, which, seemed like a lifetime to me, I was finally free of visiting the hospital numerous times a week.

I was ecstatic when I walked into my kidney transplant clinic, for my recent appointment and saw this new bulletin board on the wall:

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