Archives For Relationships with Cystic Fibrosis

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Julie’s Perspective:

I’m a 35-year-old runner, gardener, yogi, teacher, wife, and mom.  I love reading young adult novels, exploring farmer’s markets, adventuring with my family and experimenting with new recipes.  I don’t have cystic fibrosis.  In fact, for more than half my life, I didn’t even know CF existed.  I had no idea the impact it would have on my life.  But then again, for more than half my life, I didn’t know Chad.

Chad, my hubby, my best friend, my person.  Chad is the reason I learned about CF.  Chad and I met in college.  He was the manager at the best college bar in the world and I happened to be working there.  Chad was the guy who put flowers in the cooler at work for me, the guy who always stuck around to talk and the guy who walked me home after a late shift.  Fast forward and Chad’s the guy who I fell in love with, the guy who proposed and the man I vowed to partner with for the rest of my life.

Like I mentioned, when we met in college, I didn’t know what CF was.  I now understand it, as best as a person who doesn’t live it, can understand it.  I have seen Chad in awesome health – able to hike in Montana and have the courage to whitewater raft.

I have also seen him in a really scary state – unable to walk across our kitchen without stopping and unsure if he could be the person he wanted to be because of anxiety and depression.  Together, we’ve navigated doctor’s appointments, clinic visits, transplant discussions, and IVF.  We’ve explained and tried to normalize aging with CF to friends, our parents, and most recently, to our boys.

Normalizing CF….that can be tricky.  It’s hard for others to understand that our day can’t work the way most families days work.  Chad needs time, both in the morning and night, for treatment.  And, as most in the CF community knows, I’m not talking a few extra minutes.  I’m talking 2-3 hours a day for treatment, plus time for meditation, exercise, extra rest, medication ordering, nose rinsing, nebulizer cleaning and more.  CF also means that Chad sometimes can’t keep pace with others or do all the activities the rest of the group does.  As the wife, I try to balance the pace of our kids or friends with Chad’s ability so that all feel like they are doing the right thing.  And, more recently as Chad becomes older and his health is harder to rebound, it’s hard to normalize the depression and anxiety that such a demanding disease brings.  But we do.  

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Somehow, we’ve made it so CF is at least for us, normal.  The boys help clean nebulizer cups, plug in Chad’s vest, and race down to the basement in the morning to be with him while he does treatment.  They know dad has CF, but also know that he’s ok.  In their eyes, and in mine, he’s a superhero just the way he is (maybe, he’s a superhero because of who he is).  They know Chad not as a CF patient but as a dad.  The dad who walks them into school every morning, who reads extra books at night, the dad who loves DC sports and the dad who builds the most incredible Lego creations they can imagine.

There are moments when being the support person and normalizing CF can be challenging.  When our older son asked Chad, out of the blue, why Chad has CF and he doesn’t, alerts sounded in my head.  I wanted our son to know that questions are good and that it was great to learn and try to understand cystic fibrosis, as best a 6-year-old can.  But I also didn’t want my answer about recessive and dominant genes to make Chad feel inferior.  This time, I didn’t hit a grand slam. I used “weaker” as another word for recessive to try to make things easier for our son to understand.  While supporting one, I hurt another.  The balance of feelings, learning, and doing can sometimes tip.  I apologized privately to Chad later, when our son could not hear.  I have learned it is to be important to keep trying and admit when I fall short.

The other night, our three-year-old was talking with Chad after they had finished reading books before bed.  Chad didn’t know I could hear, but our son was asking why Chad “plugs in and shakes.”  He was asking why Chad does his vest treatment.  Chad, without a beat, explained that he needs to shake up the mucus in his lungs so he can play better.  Chad explained that he has CF, but our son doesn’t, so our son doesn’t do the vest.  There were giggles next because our son said he likes that vest and likes to be with dad while he shakes.

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There are times when being a CF wife and full-time working mom is really, really hard.  There are days when the list feels endless and I become frustrated that Chad can’t help or join us playing because he’s doing treatment.  Most days I don’t feel like that though.  Most days, I am grateful that I get to partner and parent with a man who fights harder than any other person I know.  He fights to get to be with me and our children.  His devotion to us is shown with every treatment.  


The challenges CF brings have brought patience, empathy, and compassion to our family.  We purposefully and mindfully look with gratitude at the bright parts of life – riding bikes, backyard grilling, reading in bed and laughing.  We can’t change that Chad has CF.  We can, though, embrace each other, every day, and do our best to spread more love.

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“I am grateful that I get to partner and parent with a man who fights harder than any other person I know.  He fights to get to be with me and our children.  His devotion to us is shown with every treatment. ” -Julie

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Marissa’s Perspective:

CFers are an incredible bunch, and Eric is no exception. Having a close view of his courage, strength, and determination has changed me for the better…and the not-so-easy times we’ve encountered have helped me grow as a person. I’ve become more thankful for the many positive things in my life, more content to enjoy simple pleasures like a night at home with my favorite person in the world. I’ve evolved into a creative problem-solver, having become a master organizer of medical supplies and sneaked cream cheese into Kraft Easy Mac to add much-needed calories. I stay cool in a crisis and am always prepared (just ask the EMTs and ER staff), thanks to some epic hemorrhages, a cancer diagnosis, and other emergencies. 

Mostly, I’m stronger. As a spoonie myself, I never would have believed I could make through what we dealt with this past fall. I was getting 2-3 hours of sleep a night as I held on to my full-time job and made it to the hospital 5+ days a week to talk to the doctors and attend transplant caregiver classes. On top of that, I was fundraising for transplant expenses and doing my own medical research in my “free” time, all while the love of my life, my whole world, fought for his life and we anxiously waited to hear if he would be accepted as a transplant candidate. 

And most importantly, I’ve become a believer. A believer in miracles, God, hope, love, and a small, small world. My new take on belief started the day after Eric was finally listed for a lung transplant after an emergency inpatient evaluation. It followed an episode of massive hemoptysis, two hospital transfers, a BAE, many days in the ICU, and a call from an ICU doctor saying that they would be forced to intubate Eric due to the massive strain his heart was under trying to compensate for his broken lungs—the call that left me sobbing hysterically at my desk before racing to the hospital while making impossibly difficult calls to our families. 

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I headed to the hospital that morning feeling relieved that Eric had finally been placed on the transplant waiting list. The relief didn’t last long: the hemoptysis, which had been held at bay for over a week, returned and grew more severe throughout the day. Not long after I arrived, Eric got a call from an out-of-state number on his cell phone, which he ignored. A few seconds later, I got a call from a number I didn’t recognize. It was a transplant coordinator, calling to inform us that a pair of donor lungs had been located and were a match for Eric, he was at the top of the list. We were in complete disbelief. Getting “THE CALL” less than 24 hours after joining the wait list? Certain this would turn out to be a “dry run”, we kept the news to ourselves and tried to enjoy the day together, keeping the news to ourselves but growing more and more worried as the hemoptysis got worse and the doctors told us nothing more could be done to stop the bleeding. I helped Eric wash his hair and we talked about the transplant education classes he’d missed as an inpatient. 

As the day progressed, we continued to wait for updates on the status, expecting each call to end in disappointment. Eric, exhausted from coughing, fighting for oxygen, and the flurry of surgical preparations, thankfully fell asleep. That left me alone in the dark hospital room, worrying about the rising level of blood in his culture cup and awaiting more news from the transplant coordinator. We finally got the call around midnight—the lungs were a go! Less than 36 hours after being listed, Eric was in surgery, and not a moment too soon. When I spoke with his surgeon the next day (after 12 hours in surgery), he told me that Eric’s lungs were in horrible shape, with a number of blood vessels ready to burst

Add to that all of the amazing things that I witnessed as Eric recovered post-transplant—breathing room air and walking as soon as he was weaned off sedation and walking nearly a mile just a couple of days after surgery. Then, a few weeks later, we were contacted by the donor’s family following a news story…and now the donor’s mother calls Eric her “bonus son.” 

More and more, I think CFers get a few more miracles than the average person; maybe it’s so they can share their unique stories, inspire the people who know and love them and leave their incredible marks on the world. 

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“More and more, I think CFers get a few more miracles than the average person; maybe it’s so they can share their unique stories, inspire the people who know and love them and leave their incredible marks on the world.”  – Marissa

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 Eric’s Perspective:

Most chronic, invisible diseases are like an iceberg. Even once you think you’ve got a complete picture of the shape of the monster, you haven’t seen the largest, scariest part. CF isn’t something that just flares up sometimes and lets you live your life the rest of the time; it’s also not something that can be solved by living a healthy lifestyle. Some CFers may prolong the inevitable through exercise, organic veggies, and meditation—but regardless, the disease will have its day. There’s no beating CF, no remission, no prevention, no cure. It seeps into every second of every day of your life and dictates every decision you make, from work to relationships and everything in between.

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If you’re lucky enough to find yourself in a supportive relationship as a CF patient, you’ll see that your disease drives most of the major decisions you make as a couple. You and your partner will make decisions about jobs, money, home, children, pets, vacation, and just about everything else by accounting for CF. 

Love is a precious and unexpected gift in the midst of the CF trials. Knowing you aren’t alone makes all the difference in the world. And when the right person comes along, they not only give you a reason to fight all the harder but help you with all of the many everyday tasks required to stay healthy and breathing. I was blessed to find Marissa, an unbelievable loving, caring, prepared woman who carries my heart, gives me hope, and takes care of me when I need the extra help.

Though it may seem impossible, CF has a positive influence. You learn to ignore the unimportant stuff and the judgment of “successful” couples and let go of visions of a “perfect” family. All of the decisions that other couples make easily become major turning points for a couple affected by CF, so we put a lot of thought, planning, communication, and sharing into our choices. Honesty is a given because a lot of simple things can be life or death.

You spend a lot more time together than many young couples, because of a) you’re stuck in one place doing treatments/at the hospital/tethered to your oxygen, and b) you’ve learned to truly appreciate the time you have together.

Every day is a reminder of life’s fragility, between the infections, hemoptysis, and gasping for air during vicious coughing spells. Having to consider the implications of an incurable fatal disease also forces you to recognize and be grateful for the time you have together.

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“Love is a precious and unexpected gift in the midst of the CF trials. Knowing you aren’t alone makes all the difference in the world.”Eric