5 Things I Wish My Care Team Knew About Me

Effective communication is the best way to establish a partnership in care. Here are five things I hope to share with my cystic fibrosis care team to help them better understand where I'm coming from and what I need to stay healthy. 

| 6 min read
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Cheriz K.
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Attending cystic fibrosis clinic is a routine part of my life. It's a day full of emotions, despite the fact I have gone 150 times in my life so far. Before each clinic appointment, I worry about my pulmonary function test (PFT) numbers and what will happen as a result of the visit. In addition, talking to every member of my CF care team is a long process, even when all goes as quickly and smoothly as possible.

I usually prepare a list of topics to discuss using my phone's Notes app to make sure I don't forget anything. I still forget items. So, after my last clinic appointment, I decided to start a new list -- a list of things I wish my CF team knew about me -- in an effort to be more open about my needs and preferences. Although it can be hard to open up at times, I hope that sharing these five things about myself will make CF clinic days just a little easier:

  1. Let's go, go, go. I'm a very goal-focused, proactive person. Everyone's personality is different, and I'm someone who sees an end-goal and won't stop until I achieve it. Even on days where I have a good clinic appointment, I still love advice … even if it's something simple like a reminder to walk more, utilize my FitBit®, or focus on gaining weight. Something. I always need some advice or something to work on.
  2. Sometimes, I feel disappointed. I have horrible peaks in my PFTs, and I'm super terrified that they will stop me from having the best score possible. Although I know I shouldn't obsess over numbers, I do and always will. The lung function test tells me, overall, how well my lungs are doing, and that concept alone is scary. So yes, I'm worried leading up to the test. 
    Then, after the test, I always expect too much. When I don't see an increase in my numbers, I always feel defeated. I'm always on top of my meds, and I have a career, kids, and a lot of things on my plate. So, when all my hard work and energy doesn't show in results, it's beyond upsetting.
  3. When my medication changes, so does my life. Sometimes, I need a new medication, an extra set of nebulizers, or treatments added into my daily routine. Honestly, sometimes I feel like it won't all fit. I appreciate when my doctor thinks about my timing -- whether it's the timing of “tune ups” in the hospital or how even one extra nebulizer every morning means that much less sleep. Each medication or treatment means that more time is going to meds -- which is time being taken away from work or family. For example, I currently sleep 10 hours at night (I need it all, too) and do four hours of treatments a day. With work, that doesn't leave a lot of free time. Thinking about the impact that something small can have on my life really helps me know that my team cares and understands.
  4. I worry. There is anxiety leading up to clinic -- especially when I know we might address certain topics that really bother me. Some are big, like my ever-growing resistance to antibiotics and lung transplant. But, some smaller topics are stressful, too. If a doctor says ANYTHING about clubbed fingers, I freak. I really don't like the thought of me looking like E.T. Although my fingers aren't bad at all, when a new doctor comes in and says “minor clubbing,” all I picture is E.T. holding up his clubbed finger saying, “E.T. phone home.” It seems silly, but for the most part (minus all my surgery scars) my CF is an invisible disease (even though I'm pretty open about my CF and most know about it).
  5. I put on a brave face. Despite my worries, I usually never show any negative emotion. I am a very bubbly and positive person, so most people don't think anything of it. But, I can get upset, disappointed, angry, and sad like anyone else. I feel bad showing this side at CF clinic because I know they have a lot of other patients who have it worse. My CF care team has to deal with A LOT on a clinic day, so I always figure, “Why make it harder for them?” This is a nice sentiment, but a bad idea.
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I know my team needs to fully understand my feelings in order to effectively treat me, but it is still something I struggle with. Survivor's guilt and feeling like I should be tougher also fall under this category.

For example, I have had a dozen big surgeries -- some life-saving, some with months of recovery. Yet, my scariest surgery was on my eyes. I was told they were only doing one eye, but when they got in they realized that the muscles were bad in both. So, when I woke up and both my eyes were hurt and bandaged, I thought they messed up and I was terrified. But, could I freak out? No, because I thought, “I have had way worse than this. I have CF, I'm brave … so deal with it.”

So yes, it is hard letting myself feel scared or upset in front of anyone because I feel I need to be brave. And even though I know I am actually pretty brave, I need to remember I'm human, too.

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Cheriz lives with her husband, Andrew, near Peoria, Ill., where she is a freelance blogger and stay-at-home mom. Cheriz has taken on several volunteer positions with the CF Foundation, including serving on the Partnerships for Sustaining Daily Care Champions Committee, Community Voice, and the Adult Advisory Council. Cheriz and Andrew have a national Great Strides team and co-lead several CF events fundraising in their community. They are foster parents, and in their spare time, they work on their family blog, MoreThanDNA.org, to spread awareness and CF education.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.