Health Update

2015-10-29_blog-post_WEB

Last week, I went to CF clinic and followed through the motions that have become second nature: check-in, put mask on, sanitize hands, get vitals and sit down to do pulmonary function tests (or PFTs). I wasn’t expecting much since I have had two colds and 21 days of oral antibiotics in the last six weeks and had prepared myself mentally for a hospital stay and IV antibiotics. After my first blow and subsequent coughing attack, I was told I blew a whopping fev1 of 71%! I don’t think I will ever experience that level of shock again in my lifetime and I want to publically apologize to my PFT lady who I told to “shut up”. I WAS SHOCKED. I also apologize for telling you, “not to joke with me like that”. After I regained my composure, I asked her to look through my records to see the last time I blew in the 70s, and she responded that it was more than two years ago because those numbers weren’t even recorded on the card. SHOCKED. Then the mental light bulb flicked on and I knew this was the doing of Orkambi. To go from 54% in July to 71% in October could only be the work of the recently developed revolutionary drug that treats the cause of CF and not just the symptoms. I also believe it is my dedication to compliancy and the work of all those people praying for me on a daily basis- I feel your support, thank you. I walked out to the waiting room to tell my mom who had come along and she jumped up to hug me while the secretaries and nurses all clapped and cheered. It was a TV sitcom moment and I teared up a little, of course.

My first question as my doctor walked into the exam room was, “Why do I feel so sick if my lung function is so high?” It is true that the last few months have been difficult. I am constantly battling fatigue and for the first time, I am admitting that I have chronic pain everyday. I haven’t felt like myself lately, but a much more stale and weathered version. Most nights when Peter gets home from work, he finds the cat and I in bed resting and exhausted from the day endured, forgoing the preparation of dinner. I have essentially become non-functional in the evenings due to pain and fatigue and we planned to remedy that. Our action plan included a referral to physical therapy for chronic pain due to coughing, to stretch and strengthen the muscles in my back and chest. That referral alone gave me hope that I would feel better soon. We had further labs drawn to make sure we weren’t over looking an obvious issue that could explain the fatigue. Also, I received my flu shot (PSA: Get your flu shot! You are not only protecting yourself but people like me who would become life-threateningly sick from the flu. Just do it, pretty please. Ok, preaching over.). My doctor also suggested a hefty round of IV antibiotics to placate whatever bugs were sucking my energy. She agreed that I am more than qualified to start IVs at home without being admitted to the hospital for 48 hours. THANK YOU! I always thought that 48-hour policy my hospital instated was ridiculous and I am glad she decided to step outside the box for her patient.

And so, here I am a few days into treatment and feeling the effects of the drugs. My weekend consisted of sleeping in my own bed, receiving psychiatric therapy from my cat, using hot packs to ease pain and only stomaching Chick Fil A and Mac & Cheese. I can’t help but feel happy and hopeful though amongst the achiness and coughing. I never, ever thought I would see the 70s again and that just shows that I have been dreaming too small and my faith too little. Time to celebrate with another round of breathing treatments and limitless episodes of Friends!

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7 thoughts on “Health Update

  1. Tim's mom says:

    Very few of us can identify what’s actually in that picture. I see a saline flush, a pressurized ball of IV meds, and a heparin flush. I also see a CF Warrior.

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  2. Olivia Ladzinski says:

    Hey Janeil! Thanks for sharing your experiences in this blog! Whether you have ups or downs, you are truly an inspiring woman who is helping many. You truly are offering education, courage, and give people the fight they need in whatever struggles they may be enduring. Although incomparable from a medical standpoint, I too suffer from an autoimmune disorder. I love reading your blog because you me hope, and I can relate to you for better or for worse. I applaud all your success this week at your appointment! The highs are always such highs that’s put a smile on our faces, or even a tear in our eye, but that’s ok because the lows are such lows that we deserve it sometimes! Keep taking it day by day or even just hour by hour, because that’s all you can do sometimes! Thanks again for taking the time to write your blog. I truly appreciate what you are doing for others and respect all you are offering through this journey. Thank you. 😊

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    • Janeil says:

      Thanks for reading Olivia! I’m glad you are finding it comforting and that makes me so, so happy to hear. Good luck with your struggles too! You are right that all you can do it take it day by day. Wonderful advice.

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