Flowerlungs

It’s one of those heavy days, and I find myself lost in thought as the IV pump alarm fills the stagnant silence in the room. The only other audible sound is coming from within my lungs serving as a constant reminder of the setting of my reality. The air is unmoving and the shadows crawling from the corners are drawing closer to me under the fluorescent light as the evening passes. The shadows are eager to steal my warmth—they try endlessly, using the slow passage of time in the hospital room to their advantage.

I hear a gentle knock reverberating from the far side of the thick door as my mom pops her head in just slightly to say hi. The door glides open and in one hand she brings a lovely bouquet of life-giving flowers; in the other hand, a bag containing food from outside the hospital walls that I desperately desire. She quickly lays down her belongings and walks towards me, still wearing her own set of scrubs invisibly soiled from her own set of patients, to kiss me on the forehead as she asks, “How is my girl?”

As quickly as it appeared, the darkness evaporates into the light and the thick silence is traded for merry chatter. The flowers stand on the counter and gleefully whisper affirmations of joy, support, and splendor into my soul and all feels right again.


Spring is upon us and I am feverishly anticipating the growth of new life and my favorite by product of the elements: flowers.

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Flowers have always meant something deeper to me than just futile flora sprinkled over the landscape of our earth. Whether my connection to flowers is an inherited trait passed down from my mom, the same way cystic fibrosis passed from her genetic makeup to mine, or just a hobby that fulfills my soul’s desire of contentment, I know that they hold significance far beyond aesthetic appeal. They continually remind me of the incandescent beauty gifted from our Lord, the oxygen dancing within the breeze, and the immense control it takes to be present and grounded despite the tireless winds. They call my hand to pick, my nose to smell, and my eyes to savor retelling of the enduring capability of a broken body.

Moreover, I have always been under the assumption that flowers are the most powerful creation in nature. They have the capacity to spark restoration within our darkest moments, while simultaneously signifying every triumph or celebration in our lives. How is it they have the weight of such influence to do both? How do they illustrate both realms of sorrow and happiness? I am unsure. But, their passive strength is something I admire and something I aim to embody within my own existence.

Within my lungs due to cystic fibrosis, thick paths of scar tissue marble through chronic infection and reactive inflammation making it more difficult to breathe as time passes. There is a strong force feeding from the resources within my body, and it takes what it wants and leaves it’s mark in the form of perpetual damage. The reality is that my organs are struggling at the hands of a very powerful disease. I recognize my reality. I know this is what’s occurring within my shell, but it’s not how I choose to see my life.

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What if I chose to believe I am harboring prosperity and beauty by growing flowers within my organs- the very creation I admire so much? As time passes, I cultivate more blooms and they fill the spaces within my lungs and unexpectedly take my breath away- a trade off for their immense beauty. I pluck the thistles and allow further growth, and they fill me with unmatched hopefulness and appreciation. They serve as a mark of both my physical pain and spiritual triumph causing each inhalation paired with exhalation to be a reminder of a blessing. CF is my blessing in many ways and will remain as such.

I’d rather my breath be stolen by prolific blooms, an overgrowth of loveliness and grace, than relish in the reality of my disease. I have learned that true perspective has the power to change the course of your life, the power to smother anxiety and fear, and the power to transform destruction into celebration. I know my fight has really only just begun- I’ll be physically and mentally flooded far beyond what I can imagine in the years to come.

But, I am not afraid because I grow flowers causing my life to be more lovely and fulfilling than ever expected.

In those moments when I fail to produce them myself- when I lack the necessary elements vital to blossom- I know alternatively the people who love me with aid in supplying them. There will be a gentle knock reverberating on the far side of my door and I’ll overhear the words repeatedly said by my mama:

I will always bring you flowers because flowers heal all.

Indeed, they do and all is right again.

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Health Update: Physical Therapy, Orkambi & IVs

This week was filled with appointments, decisions, and rearranging of medications.

On Monday, I graduated from physical therapy after eight weeks! Wahoo! How pumped am I to stop paying to workout early in the morning on my day off? The answer: So pumped. Really, PT was an excellent experience, and I am excited that it helped minimize the pain in my back from coughing and daily living. In PT, the therapists and I started with aligning and stretching my shoulder blades to achieve better posture by opening up the chest. I was taught different exercises to strengthen the shoulder, arm, and chest muscles that hold a lot of tension from coughing with the help of weights, bands, and foam rolls. Lastly, we worked on cough technique to better engage my abdominal muscles and keep my back straight, instead of contracting and rounding the shoulders on every cough. (CFers- bend forward at the hip instead of the middle back when coughing. You will feel like a new person!)

PT was also a humbling experience to say the least. In the midst of the coughing, sweating, and soreness, I recognized how simple movements and mindfulness of body placement could ultimately heal an aliment I never thought mendable. I am so thankful for the therapists’ expertise and advice. It felt wonderful to treat an issue with positive results and therefore, gain a sense of control in a body that sometimes feels wildly out of my control. Plus, there is nothing more humbling than a high school gentleman watching you do “pelvic tilts” on an exercise ball. Yes, it looked just as provocative and cringeworthy as it sounds, but I could only laugh at the ridiculousness. All in all, I highly recommend physical therapy to all my cysters and fibros out there and to anyone who is suffering from daily pain with little relief.

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On Wednesday, I headed to CF and CFRD (cystic fibrosis related diabetes) clinic with the wonderful company of my dear best friend and cousin, Cara. I told myself going in that I had no expectations as to what my PFT (pulmonary function test) or the plan of action would be. I have learned over the years to go into appointments with little expectation, that way I am able to focus on the positives of a bad appointment or celebrate the victories of a good appointment without feeling weighed down by disappointment. I knew I had been fighting a low-grade fever, increased cough, and fatigue (an on going problem for the past 5 months) but was unsure of what my doctor would say. My PFT was only down a bit- 65% and still one of the highest numbers I have seen in the last 12+ months. Those high numbers are very encouraging, and I still don’t believe this is reality when the respiratory therapist reads off the score as I catch my breath posttest.

The conversation between my doctor and I became increasingly complicated as we discussed my symptoms, life on Orkambi (a drug which targets the cause of CF), and the options available. In early December, I took myself off Orkambi for about a week (whoops) and realized how much better I felt without the drug. I had an inkling Orkambi was to blame for my level of fatigue, aches, tightness, and shortness of breath, even though the tests showed clinical improvements within my lungs. When Cara asked what I felt like, I told her, “Every morning, I wake up feeling like I lived another day in my sleep. There is no break in the fatigue.” Eventually, I was faced with a difficult decision: a) Stop Orkambi and risk losing lung function but feel better in the near future, or b) Continue Orkambi and keep my lung function but feel poorly as I do as a result of the side effects. What would you do if faced with this decision?

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Ultimately, I felt stressed making this choice. I didn’t want to disappoint Peter or my family who felt an immense sense of hope as a result of Orkambi. I didn’t want to be the patient that discontinues a drug thousands of CF patients wish they had an opportunity to be on. More importantly, I didn’t want to risk the possibility of never gaining that lung function back. However, quality of life has always been my top priority, and we agreed that if I am not able to enjoy the benefits of Orkambi after five months because my days are overwhelming burdened by fatigue and aches, what’s the point? So, for the time being, Orkambi will be removed from my list of treatments and I’ll go without.

I do want to say how very thankful I am for the opportunity to take Orkambi for the past five months. It really is a fascinating (and ridiculously expensive) drug that allowed me to cough less, use less insulin, and obtain better lung function. I can’t believe we are at this point in the advancement of CF research, and it is a time filled with so much hope. My doctor ensured me that numerous innovative drugs are coming down the research pipeline, and one of those drugs may be the perfect fit for me in the future. For now, I can enjoy the days while I wait and know that I have tried all the options available to me with a peaceful heart. I am thankful for such a great and supportive care team who continually reminds me that how I feel is more important than a number on a screen.

Now, the goal is to “reset” my body to determine what my daily baseline looks like without the effects of the drug and after the help of IV antibiotics. I definitely didn’t expect to be on IVs again this soon since I last had them in October/November. With the fever, cough, and fatigue, they are warranted. Truthfully, I am relieved, though. I can’t wait to see who I am without the weight of Orkambi and with the help of IVs to nudge me towards a version of myself I almost forgot existed. Goodbye, fatigue and grumpiness!

So, here we go again- no Orkambi, on IVs, and working to feel the very best I can.
I am snuggled in my bed, and 2016 is certainly starting out with a bang.

Health Update

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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!