Life With Cystic Fibrosis: Waiting for New Lungs, Grateful to Be Home

By Rachel Whidden

(CBS) — Coming home after a hospital stay is always great. It's when I feel my best and when my lungs are the healthiest.

‪Even the most mundane tasks like grocery shopping or stopping for gas is fun to me. During these times, I belt out every song on the radio until I can't breathe and open the sunroof regardless of the temperature.

‪This time, though, it has been a full week of doing home IV antibiotics and I'm still not at my best. Because of this, my doctor and I decided to keep me on the IV for another week.

‪During my hospital stay, after discovering that my sinuses were completely blocked, my Ear, Nose & Throat doctor (ENT) and I decided that a clean-out is the best option.

Surgery is scheduled for next week. It is an outpatient procedure done under general anesthesia and should be pretty simple and leave me feeling better.

It's important that I kick this infection completely. If I don't, I could be put on hold on the transplant list until I get better.

It is scary to be on the transplant list. It is even scarier to think of having my chance at a new and better life taken away.

I struggle at times between feeling like I could get more life out of my lungs and being fed up with the constant sick days and cough attacks.

I panic every time the hospital calls me. I never know if they are just checking in or if they've found a set of donor lungs for me.

The idea for a transplant is that you want to wait as long as possible before getting new lungs because the risks that come with transplant are so big. Statistically speaking, about 78% will survive the first year and only 51% will be alive after 5 years.

Although the numbers are slightly higher in cystic fibrosis patients, it's still terrifying. Sure, there are many cases where a person survives for much longer, but there are also cases of people not making it past six months.

Rejection stems from infection, which can be picked up anywhere if you're not careful. That's why I'm hoping this third week of antibiotics and the surgery get me back to feeling like my old self again.

I don't like seeing the worry on my friends' and family members' faces when I tell them I still can't eat or that I have to cancel plans yet again because I'm just too physically tired to do anything.

I don't like hearing the concern in my wonderful home nurse's voice when she asks me just how low my oxygen levels are.

I don't like feeling like I'm a burden to my sister and her family because I can't live on my own and need them to support me. At 25, these are simple things I should be able to accomplish on my own.

This is the first time that I've gone home after a hospital stay and not felt too much better. My priceless freedom feeling was lost this week under a pile of blankets and a warm puppy.

All I can do now is stay strict with my meds and hope for a positive outcome. I can work out as much as possible and try to keep my lungs as healthy as possible for as long as I can.

‪I can take the few hours a day I feel awake and alert and go grab lunch with my best friend on her lunch break, have dinner with my sister, see a movie with my dad, or just spend time playing with the kids in the living room.

During those moments I realize how amazing life is and how fast it moves. My niece and nephew are growing up so quickly. I refuse to miss it.

I'm looking forward to the day I'm back to writing about an exciting trip I took or the crazy night I had in the city instead of how it took two cups of coffee at noon to be able to run to Chipotle for chips and guac that I ate in bed before falling asleep 20 minutes later.

I know I can do it. I'm going to kick this infection if it's the last thing I do. Shiny new lungs are waiting. There is no way I'm letting my body get the best of me.

Rachel's previous posts:

Back in the Hospital: Life When You're 25 With Cystic Fibrosis

"I Have Cystic Fibrosis But It Doesn't Have Me"

Rachel Whidden is a professional patient with cystic fibrosis who resides in the Chicago suburbs. She works hards to live each day to the fullest. In addition to contributing to CBSChicago, Rachel blogs at Living Fast Dying Young: My CF Life. You can also follow her over on new Facebook page!

What is cystic fibrosis (CF)?

CF a genetic disease that leads to severe damage to the lungs and digestive systems. Here's how the Mayo Clinic describes it: "A defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas."