#CFRelationship – Shawn’s Wife Jill

  1. Where/how did you guys meet?

We met through a mutual friend—he lived at the beach (in his hometown of Orange Beach, AL) and I was on spring break. I was still in school at Auburn and he was working in his hometown about 4 hours away. We dated long-distance for about a year and a half, got engaged on our two-year dating anniversary, and got married last June.

  1. What is your favorite activity to do together?

We both love deep-sea fishing and just being on the water. We met at the beach, and we live on the coast now, so we’re almost always doing something on the water. But of course, we love the normal married couple stuff too, like binge watching new Netflix shows together, cooking, and hanging around the house.

  1. What is one of your SO’s funny habits?

When he takes the little tops off his meds for breathing treatments (the little plastic tops that you twist off), he literally hurls them across the room. When we were dating (long distance) and he would come to see me, he would do that, so it was like a funny little surprise for me to find the little plastic pieces in random places all over my room after he left. Now that we live together and share a room, it’s not quite as cute, but still a funny little habit that he has.

  1. What do you like best about him/her?

He has an incredible work ethic, and that’s something that has always drawn me to him. He’s pushed through a lot of adversity with his health, among other things, and is truly one of the most hard-working people I know.

  1. What is one of their quirks? 

He does this hilarious thing sometimes…if he ever falls asleep before starting his night treatment, I’ll start it for him and just use a mask on his neb cup. Sometimes he’ll halfway wake up when I do this, and his eyes will pop open so wide and he’ll jerk away from me like he’s terrified. He literally looks at me as if someone holding a knife to his throat just woke him up. And then he’ll go right back to sleep. And not even remember it when he wakes up the next morning.

  1. Did you know about CF before meeting your SO? If so, what?

Yes. There was a girl from my hometown that had CF. She was a bit older than me and I didn’t know her well, but I had heard of CF and knew the VERY basics of it. (Little did I know how much I’d learn later!)

  1. Did you know before you were dating that your SO had CF? How did you find out (When did your SO tell you about their CF)? What were your initial thoughts?

He mentioned that he had CF one of the first times we talked, which was before we started dating. But if I’m being completely honest…I had Facebook stalked him prior to that (haha 😊) and found out that way. The way he talked about it, it really didn’t seem like a huge deal to me. It’s just always been a part of his life, so he was very matter-of-fact about it, almost like someone just saying “oh yeah, I’m a construction worker. I build houses every day,” except for him it was more like, “oh yeah, I have CF. I do breathing treatments every day.”

  1. What did you do to learn about the disease? Did you SO play an active role in that (did he/she tell you to avoid the “Internet definition”)?

I tend to be a very analytical person in general, so my first instinct once we started dating was to do a lot of my own research. Some of that was done through the internet, some through nurse friends, and some through reaching out to others in the CF community. He slowly opened up to me about his CF once we started dating, but I immediately wanted to know EVERYTHING. He would mention one of his medications or a symptom he was having and I’d immediately look it up to learn more about it. Obviously, that can be a little scary sometimes, but overall, I find it helpful. I still do that as he has new symptoms, and I find it’s often helpful in gaging his health and bringing things to the attention of his care team.

8a. Do you ask your SO a lot of questions about CF? (In a way to learn more about the disease)

I asked lots of questions in the beginning, but also tried to be sensitive with my questions so that he could open up on his own time.

  1. Do you talk about CF?

I do, often. Everyone that knows me or my husband knows that he has CF. It’s a part of who he is and it’s a part of our lives. Breathing treatments, medications, sitting on hold with pharmacies/doctor’s offices/insurance carriers for half a day, hospital stays…it’s all a part of our normal. I can’t imagine not ever talking about it.

  1. What was it like the first time you saw your SO do treatments, how long did it take to get to that point?

It was very interesting to me. Again, I’m a very analytical person, so I wanted to know everything—what each medication does, how the nebulizer works, how often he does treatments. We had only been dating for about a month or so at that point, but had been hanging out on and off for about nine months.

  1. How do you support your SO in their battle with CF (reminding him/her to take pills, wash neb-cups, do IV infusions, going to doctor’s appointments)?

Todd Helzer Photography

I’m very involved in his care. I schedule his doctor’s appointments, call in refills of his meds, track his health (fevers, antibiotic cycles, etc.) in my day-planner, communicate with his clinic, you name it. He’ll often fall asleep during his nighttime treatments, so I’ll switch out the meds and put the mask on him while he sleeps. I also haven’t missed a doctor’s appointment since we’ve been dating and have stayed with him every night during his hospital stays. I know that all CF spouses might not be that involved their SO’s care, but it’s what works for us. Knowing that it’s helping him breathe easier makes it so worth it for me!

  1. What’s the craziest thing you’ve had to do that is CF related (change IV bandage, remove IV, physically do something your SO because he/she was unable, etc.)?

This isn’t really something that I had to do, but when we were on our honeymoon, he forgot to pack the extra bottles of enzymes that I had laid out for him (thanks ADHD!). We realized about halfway through the week that we were running low, and had no more bottles of enzymes. Back home, my mom came to the rescue and drove to FedEx at 7PM, and had his enzymes overnighted to our resort in St. Lucia. (She definitely wins the mom/mother-in-law of the year award 😊) In addition to that, his nebulizer went out on the second day of our honeymoon. We went to the onsite nurse at the resort, who was able to get us one the next day….turns out, that one had a weird European plug that didn’t fit the outlets in our room, and we couldn’t find a converter anywhere on the island. (To tell you how that story ends, we ended up getting his old nebulizer to work just enough to barely push his medications out, but we were also relying heavily on inhalers and the nice salty air the rest of the week!)

  1. How do you think CF has shaped/modeled your SO into the person they are today?

It definitely gives him more of a zest for life—he knows the importance of making the most of every moment and every opportunity. I think it’s also made him stronger as a person. I’ve seen him get through some pretty rough times health-wise without complaining or really even letting on that he’s sick (to people that don’t know him well). I think his CF also contributed to his work ethic—having another 60-70 years to work and do things like save up money, buy a house, or invest isn’t a given for him. So I think he’s always felt this pressure to get ahead financially as much as possible, which is both a blessing and a curse.

  1. Does your SO’s health change your opinion on how you look at you own health?

It definitely makes me realize how blessed I am. I’ve dealt with no serious health issues up to this point in my life, and I never understood what a blessing that was until I met him.

  1. Did you ever second guess the relationship because he/she had CF?

Absolutely not. It’s just always been a part of our normal. Sometimes I actually forget that other married couples (without CF) don’t have to think about daily treatments, enzymes, etc. haha.

  1. What has been the hardest thing to get used to (ex: working around treatment schedule, sharing a bed…especially with IVs, GI issues…, spit cups,)?

Todd Helzer Photography

It’s difficult for me to not always have a plan. Sometimes a flare-up comes out of nowhere. Sometimes that sickness will lead to a hospital stay, sometimes it won’t. That’s really difficult to layer on top of a full-time job and just adult responsibilities in general. I’ve definitely had to learn to be more flexible and adapt to those circumstances if and when they come.

  1. Has CF impacted spending time together? (ex: cancelled plans last minute, illness related, not going “out” as much as peers)

We’ve definitely had to cancel plans before because he got sick, and I would say we don’t go out as much as our friends do. Thankfully the friends and family in our lives are very understanding! But it hasn’t really impacted time with one another as much as it has with other people. Usually when he’s not feeling well, I like to be with him anyway to help take care of him/keep a check on him—so we kind of make that into our own “date night” and will just stay home and watch a movie and order dinner in.

  1. What do you and your SO do when YOU are sick, how is that impacted because of CF?

I tend to be pretty independent, so usually I’m ok to take care of myself when I get sick, but there are times that I’ve been sick that Shawn has definitely babied me. It puts a little more of the responsibility on him for doing his own treatments and keeping up with his own meds, because when I’m sick, obviously I can’t help out as much. And then, there’s the added worry that he’ll get whatever I have. It’s just a give and take depending on what’s wrong with me, and how he’s feeling at the time.

  1. CF and family planning, how does that impact the relationship?

This one is hard to say for us, as we haven’t been married all that long yet, and are a while away from seriously thinking about kids. But it’s definitely been a topic of conversation, even when we were dating. For us, we know it will be possible to have kids through IVF—so the biggest hurdle with that is finding a way to pay for it. (IVF is crazy expensive, and most insurance companies don’t cover it.) In my mind, it’s kind of a blessing that we know we’ll have to go that route upfront; I know people that are struggling with infertility with no rhyme or reason, and they often pay tons of money on tests and medications before they ever even know they have to do IVF. So we at least know at this point that we should plan for that if we ever want to have biological kids. (Also, side note for the general public: it’s good practice to NOT ask a newlywed couple, or any couple for that matter, when they want to have kids. I know people mean well, I know they do. And I honestly don’t get as offended or upset by it as I do annoyed. But there are LOTS of people struggling with infertility, and asking them when they’re having kids or why they’re not having kids yet can often hit a nerve with people. So, please, just don’t…)

  1. How have YOU coped with the progressive nature of the illness?

It hasn’t been too tough the last few years, because he’s been relatively stable, and we’re hopeful for some of the new drugs coming out soon. I definitely have my bad days though, and it just takes a lot of prayer for me. My faith is a big part of my life, and I’d say it’s been strengthened through those bad days. If I am ever really worried about his health declining, it also helps me to take action. I’ll often sit down and make a list of things we could maybe be doing a little more consistently treatment-wise, do a good deep clean of the house, or buy a ton of really healthy groceries.

  1. What about the financial burden of the disease?

That struggle is soooo real…we have great health insurance but still have enormous copays on certain medications, and of course clinic appointments and hospital stays aren’t cheap either. It’s not easy for most young married couples starting out, but having the added financial burden of a chronic illness can be tough. Thankfully, we’ve had a few family members that have helped us out big time in paying off medical bills. We also have a grant through the Healthwell Foundation that helps with medication copays, and they are amazing. I can honestly say that we wouldn’t be where we are financially if it weren’t for those two things.

  1. Has CF forced your relationship to be stronger?

Todd Helzer Photography

I was 19 and he was 20 when we first started dating, but I remember us having to have some very grown up conversations even then—conversations that most couples wouldn’t have until they’d been together for years. Things like how Shawn would feel about a lung transplant if that time ever came, what would happen if his health turned for the worse, infertility, life insurance, etc. In that aspect, I’d say that it definitely made our relationship a little more mature and a little more serious early on. In another way, I’d say we have a really strong dependence on one another. He relies on me a lot to help with his treatments and medications, and I rely on him a lot to make good choices for his health and take care of himself when I’m not around. There’s also just a different kind of closeness that we share. Even over the phone, I can literally tell how he’s feeling based on his voice and his cough. I also think about tune ups—don’t get me wrong, they suck and they’re definitely not easy for him—but we have had some of our best date nights in a hospital room, eating a dinner that we’ve ordered in and watching a movie. After his last tune up this past September, we had been together just about nonstop for the whole 14 days, and in weird way, we felt closer than we had in a while. Life gets so busy in the day to day, but something like a tune up forces both of you to slow down and remember what’s important.

  1. What are some Funnier moments that stick out to you that would only happen to someone dating a person with CF?

It’s just always funny to me when he’s in the hospital and he unhooks his own PICC line. A lot of times, the medicine will be done, but if the floor is busy or a little short on nurses might take a while to get to his room to unhook him. He knows exactly how to unhook himself though, so he’ll usually do that instead of waiting. I can always tell if we’ve got a nurse that’s not used to dealing with CF patients, because they always freak out a little…

  1. What is your favorite thing about your SO? (CF related or not)

I just appreciate the fight he has in him. He has never used his CF as an excuse, and he never lets it get him down. A lot of people don’t understand how time-consuming CF can be, even for someone that’s relatively healthy. But he never complains, and never lets on that it’s even a big deal. He is so strong, mentally and physically, and I admire that in him.