Relationship Firsts with Cystic Fibrosis

Over the weekend, my girlfriend brought up the fact that we’ve been dating for about 2 years, which is pretty cool.

Here’s a wonderful picture of us:

Another great Saturday with the girlfriend! This time at the Greek Festival!

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She’s (obviously) a big fan of my blog, and recommended that I write about all the “firsts” that people encounter when they date someone with CF.

She’s really pretty cool with everything that CF throws at her, so I think I’ve taken a lot of these things for granted, but then we started talking about it. What may not have seemed like huge moments for me, have turned out to be pretty important steps for her.

I think there are a few reasons for why I’ve rolled over some of these moments. The biggest reason is that I’m very open about my CF. My illness not something I ever like to hide, and I always include my (very supportive) friends in my care. The second reason, which she may or may not care for, is that I’ve had good and bad relationships throughout my teen and young adult years to “perfect” how I go about sharing my CF with whomever it is that I am dating.

I’m not going to begin to guess why some of the following situations have seemed important or even like little milestones, but I will say this… it’s definitely not easy to date someone with CF, and while there are so so so many good days, there are plenty of really hard days. I know I go through horrible mood swings, and periods of inconsistent health, and quite a few other things that I’ve talked about on my blog, so when someone who has no prior experience with CF takes a dive into our lives, it can be incredibly overwhelming and even scary.

I’m certainly very fortunate to have found someone who is willing to learn, and throw herself in the world of CF. It makes things a lot easier for me when they should be getting tougher.

So with that being said, here is a list of some of the good, bad and ugly firsts that people have to go through when it comes to dating someone with CF.

Welcome to the world of CF 

For any girl that I have ever dated, I’ve brought up my CF on the first or second date. CF isn’t the full picture, so I almost didn’t want to add this one, but I guess it’s important. The bottom line is that this really is the first hurdle (as much as I don’t think it should be considered a hurdle). Some people are willing to take part in the fight, and others are not – it’s the hard truth, something we can get into another time!

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First Time Doing Treatments (in Front of the Girlfriend)

The Vest is a little odd-looking, I’ll give you that much. Treatments are an essential every day part of my life. It can also be a moment of vulnerability, especially if we’re not feeling well. I’m beyond productive when I do treatments – I bring up a lot of mucus. It’s really not very pretty, I gag, have snot flying out of my nose, sometimes I’ll even get a mucus puke (shout out to my embarrassing #CFproblems blog) and I’ll start sweating. It probably seems like a crazy experience to the casual onlooker who has never seen it.

First Time Using a PICC

When we first started dating, my girlfriend was very squeamish and was the kind of person who passes out when she get’s blood drawn. That’s changed. People see IV’s and shit all the time in the movies or TV shows. Who hasn’t watched Grey’s Anatomy? It’s a different experience to see it in person. IV’s are a very visual indication that we are “sick.” I know we always talk about the invisible illness side of CF… well let me tell you, IV’s are not invisible. I do love to play jokes on people when I’ve got an IV in. It’s a favorite pastime of mine to let my friends push saline down the line and then pretend like they are causing HORRENDOUS pain. Let me have my dark humor! My girlfriend has even seen the homecare nurse come over and place a peripheral IV in my forearm… and didn’t pass out.

First Time Mixing Meds

Chemistry in a box! Some of our CF meds, whether inhaled or IV, have to be reconstituted (by the patient). It involves alcohol swabs, syringes, needles and steady hands. It’s basically our chance to be like Walter White. I consider this to be one of my hidden skills… you know, basic nursing, pharmacist, whatever. I’m actually beyond impressed when I see nurses fly through med reconstitution; maybe I impress the casual onlooker when I do the same? It’s embarrassing as fuccccc when I accidentally stick myself in front of someone.

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First Time Farting 

The digestive issues that come along with CF are no laughing matter. I’ve got farts that can send a building into lockdown. Unfortunately this is one that I usually need to get people used to pretty quickly because I don’t really have much control over it. It’s funny the first time it happens, maybe like a week into a budding relationship, “oops sorry how’d that happen?!?!” It stops being funny after awhile. My poor girlfriend has suffered two years of my horrendous gas. About a month ago I thought I was alone in a room, and let one of those marathon farts go. It lasted no less than 10 seconds. A sigh of relief came across my face, but only then did I hear from down the hall, “WOW!!!!!!!!”

Actual conversation with my girlfriend

First Time Showing Off the Feeding Tube

People are really self-conscious about the way feeding tubes look once they are placed, and I get it. Similar to the IV, it’s a very visible indication that we are “sick.” I got over it pretty quickly. Mainly because my dad LOVES to tell people that I have one. We could be in a group of people talking about literally anything. “Wow, BC got slammed by Notre Dame the other week, huh? By the way, did you know Gun has a feeding tube?” Anyway… regardless of what I think about it, the g-tube is definitely one of those things that you can’t really spring on people. I can’t take off my shirt and be like, “oh that old thing?” I usually do a bolus feed in front of people to show it off….. or funnel a beer through it.

First Time Experiencing a Feeding Tube Malfunction

I told this story in my #CFproblems blog, so here are the spark notes.

  • I spent weeks courting a girl in college
  • Things started to work out
  • We were watching Netflix
  • Feeding Tube experienced a critical malfunction
  • I threw up on her… through my stomach

There’s really not much of a recovery you can make here. The girl you’re dating either has to be able to deal with that kind of thing, or she can’t. I’m really easily grossed out, so had the roles been reversed, I don’t know what I would have done.

First Time Sleeping In the Same Bed

I can’t imagine that sleeping next to someone with CF is the most fun thing in the world. Sleeping isn’t really the most comfortable thing in the world for someone with CF. We cough, make weird breathing noises and fart in our sleep. Take all of that and put it on top of a feeding tube and a PICC line. If I’m ever sick and having a sleepover with my girlfriend, she must think it looks like I’m connected to the Matrix while I try to sleep – wires and tubes all over the damn place. I know my girlfriend is paranoid during those times, and probably for good reason. I would NOT be a happy person if one of those things got ripped out of me in the middle of the night.

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First Trip to the Doctor

I think this one is a little weird, but the girlfriend was pretty insistent on this one. For as open as I am about my CF on here, I’m pretty private when it comes to my intimate medical details, test results and trips to the clinic. My girlfriend did, however, come with me to a long study visit, and it was back within the first 6 months that we started dating. She felt like she wanted to see what it looked like – after all, how many 20-somethings have seen the inside of a specialized clinic?. I compromised with a study visit. Come to think of it, I’ve had a bunch of friends stop in and say hi during a study visit… they are just so damn boring.

First Time Letting Her “Help

It took me about a year and a half to let my girlfriend actively assist in my care. In fact she had to explicitly tell me that she wanted to help. This “first” was a big one for me. Apparently I have trust issues, because when she brought it up, my first thought was, “absolutely not.” There are maybe a handful of people that I trust unconditionally, so when it comes to active care, I’m not looking for a helping hand. Eventually I came to the conclusion that it’s in our best interest to get her to the point where she can be a first responder. I decided I would make her first shot at helping a memorable experience, so I had my girlfriend swap out an IV med while I was driving on the highway. After all, that is how I learned how to drive. First time out, my dad threw me on the Northern State Parkway in a thunderstorm – I was 16 and we both survived. I figured I would put her through a similar situation when learning how to operate an IV – alcohol-saline-alcohol-med from the passenger seat across the center consol. We both survived, and more importantly, she didn’t blow the line or shoot an air bubble into my veins. A job well done!

First Time Discussing Infertility

This is a scary one for a lot people, and it often serves as the deal breaker for quite a few people with CF. If you talk to enough people with CF, you’ll hear that they’ve been left behind solely because of this reason. Male infertility is a reality in CF. That doesn’t mean we are sterile, it just means that things don’t work properly (is it really that surprising? Nothing in my body works properly). I actually once read that male infertility is the number one most common symptom across all CF mutations in men – I can’t cite the article, because I can’t remember where I saw it for the life of me. Someone help a guy out in the comments. All I know about infertility is that one of the ways around it involves a giant needle….

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First Time I’ve Needed To Cancel Because I Was Sick 

If you’re hanging out with someone who has CF long enough, eventually we’re going to have to cancel plans last minute. Last year I was slated to be a plus 1 for a wedding. I had to cancel on my girlfriend and her family like a day or two before. Fever, nausea, nasty cough – some battles aren’t worth fighting.

First Time When SHE’S the Patient

This is really kind of a hard one for everyone, I think. My girlfriend is really good about watching out for my health. If she’s ever sick she stays away. The way we see it is that the more time I spend being sick, the less time there is to do things we want to do. In fact all my friends are like that. No wonder I’m so lonely during cold and flu season. …just kidding. There was a time about a year and a half ago when my girlfriend was having some health issues and she was spending evenings at her local ER until the doctors were able to figure out what was going on. It’s really kind of a weird thing for a person with CF – do you go to the hospital to be supportive? The ER during flu season is like the last place anyone with CF should ever be. I have zero faith in a small town hospital’s infection control. There’s a reason why we go to CF centers. Ultimately I think it’s important to be there during critical moments, but otherwise staying away is just as important for everyone’s sanity. My girlfriend was very clear with me that she did not want me around when she was in the hospital, and I don’t think that she said that because she didn’t like me. I did defy her wishes one evening when her family was out of town. I was all masked and gloved up in the ER with her until her mom and brother were able to get there. It’s a wild experience not being the one in the hospital bed. I think I’d much rather be the patient – it’s a lot easier to take the pain that I’m used to than it is to see someone, who’s very important to me, suffer in a hospital bed.

First Time Being Helpless 

Feeling vulnerable is at the core root of all these “firsts,” but I think this one underscores everything. I think we all have some fear or anxiety of feeling totally helpless. We all want to have some control over what happens to us, but in life with CF, the sad truth is that we don’t have control over everything. Like anything else though, I think these are also times when can learn a lot about a bunch of different things. It’s very telling of a person to see how he or she acts around me when I am unable to fend for myself. I’m talking about times when I’m so sick that I can’t even get up and down the stairs or from the couch to the bathroom. My girlfriend has experienced some of this, but she hasn’t seen the full picture – for example she’s never seen me racked up in a hospital bed dependent on oxygen. Only a handful of people have seen me that way, now that I really think about it. About this time last year, though, I was on an IV med – Polymixin-B. It’s great stuff, and don’t think I’m saying this to deter you from ever using it, but it comes with horrendous side effects. It impacts just about every single part of the day, from sleeping, eating, coughing, walking, to feeling. It’s a horrendous thing, but such is life with CF. Whenever I’m on it, I basically find myself in the fetal position from my first dose through a day after the last dose. Because of that… I am totally reliant on the people around me. As far as I can remember, that’s really the only time my girlfriend has seen me strung out and helpless. It’s a comforting feeling when there is someone in your life that can see you like that and not feel the urge to run away.

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First Time Coughing Up Blood 

This is definitely the most “shocking” first. The look on my girlfriend’s face was priceless when she saw me cough up blood for the first time. It was very similar to the face one of my best friends made in high school when he saw blood pouring out of my mouth at football practice. Hemoptysis always looks way worse than it is. I think we have movies and TV shows to thank for that. Heroes or villains always die at the end of the movie with a mouth full of blood. There really wasn’t much for my girlfriend to do in the moment, except not panic. In fact… not panicking is like my one rule for people when the shit hits the fan. I survived. She survived. We’re all good.

First Time Meeting My Friends

Last one and it might be the most important. This is always a big moment for a significant other, but it’s definitely highlighted in the CF world. My friends (and family) are incredibly protective of me. I’m very fortunate to have such great friends. A lot of them have either lived with me at one point or another, or have played a significant role in my day-to-day life, so they know what I have to deal with. I suspect a lot of people with CF probably feel the same way about their friends. In so many ways, they serve as the first line of defense around my health. It’s important for me to account for other opinions, and I know they sure as hell wouldn’t let me date someone who would be a threat to my well-being.

When the squad goes to see Star Wars #forceawakens #usetheschwartz #StarWars

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She’s dressed as Darth Vader holding my dog, and has affectionately become known as Darc Vader to my friends.

After having worked on this blog, I’ve come to realize that it’s something of a small miracle that I even have a girlfriend at all. Between all this shit and my crazy love for video games (yes I’ve made her sit there and watch me play Xbox), I’m probably not the easiest person to date. Like I said, though, I found a girlfriend who has thrown herself into the world of CF and tries to absorb as much as possible. She reads other blogs, scholarly articles and asks a lot of questions – all of which I am willing to answer. Ultimately these “firsts” are like an open window into our lives of uncertainty with CF. On the surface they may be scary or a little disconcerting, but they are our normal, the people who choose to date us need to be willing to find a new normal in their lives. Those people are out there!

What are some relationship firsts that you’ve had to endure with CF?

Oh… and here’s a better picture of us. She’d probably kill me if I didn’t use an appropriate picture:

HBD loser

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