I Hate CF

Sometimes I can almost forget that I have cystic fibrosis. Almost. Then a bout of pneumonia, or a lung bleed, or sinusitis, for example, lands me in the hospital and the disease crashes down around me all over again. This type of wake-up call occurred in big way a little over a week ago, when I was reminded of what a cruel, crippling, vicious, fatal disease cystic fibrosis is.

The details that led up to this hospitalization, from which I’m currently writing, were much the same as any other time I’ve been ill. An infection settled itself deep within my diseased lungs and caused me to cough up copious amounts of mucous, and wheeze, and gasp for air. This was accompanied by fatigue, headaches, dizziness, and so on. This time, however, I deteriorated much more quickly than usual, and it seemed as if I was getting nearer to a critical state each hour that passed.

In addition to the basic symptoms I’d had for a month or more, I found myself needing to wear an oxygen cannula under my nose in order to move around freely without setting off a coughing fit. Then the amount of oxygen I needed increased steadily. Each day it seemed that my lungs were being progressively saturated with cement instead of this precious oxygen. By the time I finally sought medical intervention, I could barely move around at all, even while wearing oxygen. My coughing was accompanied by gasping and gulping for air. I felt as though I would lose consciousness with each coughing spell, and the result was an excruciating headache that seemed as though I were being stabbed in the cranium. My lungs ached and crackled, and piercing pain and heavy pressure set in. Each coughing episode would begin and end much the same: cough, cough, gasp, cough, gasp-gulp, cough, cough, cough, gag, gasp, deep breath in, dizziness, headache, breathe, repeat.

My primary doctor knew I needed IV antibiotics, but before he could formulate an effective combination of medications for me, I’d already become a serious case. So I bypassed him and my regular hospital and headed to the only other facility that I go to- the University of Wisconsin Madison Hospital.

My mom and I made the six-hour trek to the UW Hospital, where the pulmonology department is quite well versed in treating cystic fibrosis patients. Loaded with oxygen tanks in the backseat, Mom’s trusty Toyota became the ambulance that delivered me to the safety of this hospital. Upon checking in at registration, I was immediately asked to take a lung function test to assess how my lungs were doing as compared to a predicted set of numbers. One very important measurement showed that I was testing at only one percentage point higher than the unofficial percentage at which a CF patient typically begins discussing a lung transplant. One measly, tiny, percentage point. Such a small number, but so extremely important and symbolic to me. Taking into account how shitty I felt, I was not at all surprised by this result. I became truly afraid at this point, though, because I realized that I would have to be comparably sick before any transplant facility would seriously consider giving me a set of lungs. In other words, I’ll practically be on my death bed when the transplant finally happens, assuming it does happen at all, and that doesn’t seem right to me. I don’t want to spend months in limbo, barely alive, hoping for some other family’s tragedy to become my second chance at life. That’s simply a reality upon which I try not to dwell.

The team at the UW Hospital set up a treatment plan for me, and it began to take effect only a few short days after my arrival. It was as though a weight lifted off my chest, and I was able to draw priceless oxygen into my battered lungs. For the first time in months, taking a deep breath wasn’t painful and it didn’t induce violent coughing. The doctors decided that it would be best for me to stay as an inpatient for the entire two week course of antibiotics, so here I sit, hooked up to an IV, doing nebulizer treatments and chest/lung physiotherapy four times each day, feeling much better now, and finally seeing some light at the end of this proverbial tunnel.

Despite the severity of my condition, I knew that I wasn’t going to die this time around. And I probably won’t die the next time I get really sick, either. But someday I will, and that’s just the plain truth. That’s what keeps me up and running- the same reason anyone else in the world makes a “bucket list,” regardless of health or lack thereof; fear of dying can either cripple you or motivate you. I choose to utilize that fear, and let it push me to learn and see and do new things. I just want to embrace life fully and live out loud, and hopefully make a small difference while I’m at it. Being able to reach out from my hospital bed by writing this is a pretty damn good start. Here’s hoping someone is listening.

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9 Responses to I Hate CF

  1. Kat says:

    You simply amaze me! I will keep you in my prayers and support you any way you need. Let’s keep in touch. You are loved!!

  2. Linda Wercinski says:

    U are amazing women I know it the first day I meet u you are blessed with great writing

  3. michelle ballinger says:

    Am having trouble seeing this through the tears. Thanks again for sharing your beautiful self. Prayers for your recovery.

  4. Amber says:

    Even though we have know each other since you were born, I have learned more in these 3 posts than all of those years. Your honesty and matter of fact attitude is awesome, just one of the millions of reasons everyone you meet falls in love. I hope you’re feeling better soon. Love you Lyn. Say hi to the family.

  5. I hate CF too! My little sister Grace, is almost 12, and has CF also. We live in Escanaba. It’s always neat to find/meet someone else nearby who understands what you’re going through. Grace is relatively healthy despite the obvious but as you probably know, these winter months can be super rough. Grace is dropping in almost all her stats and is working hard to bring them up but you know that’s hard to do. I think she feels defeated lately.
    I’ve read some of your blog posts just now (found thanks to niki shiavo on fb) and realized you’re my age (I’m almost 28). I thought it may be neat to get you in contact with her, and give her some encouraging words. It’d be like her Big CF Sister 😉 I understand it may be an odd request, but like I mentioned before, it’s always nice to find someone who knows what you’re going through. You can find me on Facebook under Amberly Schmidt or contact me on my website, amberlyphotography.com.

    Thanks for reading and sorry that you’re I the hospital, AGAIN. Hang in there. God is Good.

  6. Patti Benson says:

    Hi Lyn – I just found the link to your writings and began reading them. You are one brave and amazing young woman! I remember many years ago, at one of Kylee’s birthday parties in fact, you told me that your aspiration in life was to become a journalist. I remember thinking to myself how amazing it was, at such a young age, for you to know what you wanted to do! Your writings are so open and personal, they just draw the reader in. I look forward to future writings from you! Keep up the good work and I will certainly be keeping you in my prayers. XXX OOO

  7. Ellen McCarthy says:

    HI Lyn,
    Our thoughts and prayers are with you all the time. You are an inspiration to so many with this awful disease that you have. You are a fighter and don’t ever quit.
    Love,
    Ellen

  8. judy says:

    we’re listening and passing it on. judy

  9. Donnaler says:

    So proud of you! Love you

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