Lungball

I know by now I've mentioned a couple of times that I've only ever been hospitalized once (I'm not counting surgeries, that's another post). Well let me tell you the story about that one time, cause it's a good one. It was about 9 years ago and probably the longest and scariest 10 days I've ever experienced...

My husband and I (not married at the time) were back in our hometown for our friends' wedding. I don't really remember feeling bad, but I was freezing and could not get warm. It was the middle of July in Wyoming so there's no reason I should have felt this way. I distinctly remember borrowing a hoodie from my sister and sitting on my parent's front porch in the sun for a long time and still not being able to feel warm. But we had things to do and people to see, so I went on with business as usual. The night of the rehearsal dinner I started noticing that I didn't feel well. When I'd take a breath it felt like my lung was going to pop. I tried going to the bathroom to see if maybe I just had a gas bubble, and my husband tried popping my back to see if something was just out of whack, but neither thing worked. As the pain intensified and I could barely take a breath in, I decided it was time to call the hospital and see what I should do. They told me that I could have a pneumothorax (air between lung and chest wall) and to go to the ER right away.

So scared, crying, and in pain I headed to the hospital. Luckily it was late at night and not very busy so I got in pretty quickly. I had x-rays done and blood drawn. The nurse that did my blood draw was more interested in flirting with my husband and ended up blowing a vein in my arm (thanks a lot lady). An ER doctor came in and told me that I had a cyst in my lung and I would need to be admitted. I panicked. I had no idea what a cyst in my lung could mean and I remember asking if it was something that they could fix. He kind of chuckled and said yes, like I was being over dramatic. Doctors just assume that when you have CF, you're used to things like this happening. I also was running a pretty high grade fever (hence the freezing) and my brain wasn't thinking super clearly.

I was checked into the hospital and had more tests done. Needless to say I missed the wedding and after two days in that hospital we decided that it would be better if I went back to Denver and saw my CF doctors. I won't even go into how horrible my experience at this hospital was, but if I'm ever back in my hometown and have an emergency, I'm screwed. I checked out AMA (against medical advice) and we started the journey back to Colorado.

The x-ray from after my lungball
had been popped. It was in my upper
left lung.

It turned out that the 'cyst' was really a MRSA infection abscess. The x-rays were actually kind of amusing, I wish I still had a copy. It looked like I had a rubber bouncy ball lodged in my lung, like the kind you find in the quarter machines at grocery stores (why we called it my lungball). I was outfitted with a PICC line (an IV line inserted into my upper arm that ran to just above my heart), since I would be on antibiotics for an extended period of time. They also had me start using the Vest (first time I'd ever heard of the jiggly vest) to try and pop the abscess so the antibiotics could reach it. This whole time my lung functions were above 100% and my O2 saturation was at 100%, the doctors found it very odd and I even had a medical student write a paper about me, neato!

Well nothing worked to burst my bubble, so they ended up having to do a chest tube to pop it manually. Not really an experience I wish to ever have again. Luckily it wasn't an emergency so I was under the influence of some heavy pain meds, which helped. After 10 days of total hospital stay I was going a little bit crazy and managed to cry my way out of there. Hospital stays are no fun. You barely get to sleep since someone comes to check on you every hour and draw blood. Side note: thank the heavens for PICC lines because then you don't have to get stuck every time they draw blood. The second night I was in the hospital in Wyoming I had to beg the phlebotomist to draw out of my other arm, because they kept using the same one and it was so raw and sore. She got super huffy about it because my IV was in the other arm so she had to have a nurse stop it. Cow.

Once I was released I had to go back every morning and evening to get my hard core IV antibiotics. This meant driving across the city of Denver (quite literally) and back twice a day and going to work in between IVs, the fact that I was totally okay with doing this is how much I wanted to get out of the hospital. Eventually I was placed on some lower dose antibiotics that my husband could administer from home. He had to learn how to flush out my PICC line and setup the IV. He was amazing through the whole thing, he slept at the hospital for several nights, but since we lived across the city and he had to work I talked him into sleeping at home and just coming by after work. Once the home IVs were done and all of my follow up tests came back clear I got my PICC line out, which was just a nurse saying "take a deep breath" and pulling 3-4 feet of IV tubing right out of my arm. Yep, that is as fun as it sounds.

I had a lot of firsts during this time that are old hat to most CFers, so it was quite a learning experience for me. It was all very scary and exhausting, but luckily I came out the other side of it okay, if a little bit (a lot bit) paranoid. I called into the CF clinic for every little twinge for a few months and probably drove the nurses a bit crazy. I haven't tested positive for MRSA since then which is fabulous. I really don't want a repeat of that experience again.

New Habits

How do you change 30+ years of habits (or lack thereof)? How do you deal when one day everything changes and you have to say to yourself “Ok, this is me now. This is my new reality.”?

I know I say this a lot, but I’m going to say it again. I’m really lucky with my CF. I know that I am and I can’t even express how deeply thankful I am for it. Most people with CF don’t get to live the essentially normal life that I’ve been able to lead up to this point. But right now I’m feeling like it is coming with it’s own set of drawbacks.

The Vest & nebulizer corner where I
spend time every morning & night.

If I had had to do chest therapy for my whole life I’d be used to it. It would be part of my daily routine that I wouldn’t think twice about. But now instead of coming home from a long day of work and crashing on the couch, I have to go put on my Vest and have my body pounded on for 30-45 minutes while I nebulize saline. Instead of hitting the snooze button a few times, I have to roll out of bed at the sound of an early alarm to do my nebulizer(s) and sinus rinse. Instead of doing whatever I want when I want, I have to make sure to plan around my treatments so I don’t miss any. Instead of taking days off when people come to town, I have to use half of my vacation days for doctor appointments.

Could things be worse? Yes, 100% they could. Do I feel grateful for the fact that I’m still relatively healthy? Yes, completely. But does that mean that I can’t grieve for the way of life that I’ve lost? I’m at the point where a lot of the novelty has worn off and I’m having to come to terms that this is how it will be forever. That more will be added down the road. I’m trying really hard to make all these new things a habit, but it’s hard. I’ll be the first to admit that I don’t have the greatest of will power. I have to lecture myself everyday about why I need to use the Vest. I’ve had my setbacks, missing a week or two by taking a day off and then repeatedly telling myself that I’ll start it back up again tomorrow. I’m having to learn that a life with CF means no days off from treatments and it’s a bit overwhelming.

I’ll make it through this period of change, I know I will, there just might be a little kicking and screaming along the way.

*My parents did have do chest percussion on me when I was a kid, but at one point the doctors said that we didn’t need to and even later in my life when I got the Vest it was a “do it when you feel like you need it” kind of thing, not a strict regimen.

Fitting In

I just got done attending the first BreatheCon, a virtual conference for adults with CF. It was quite
something to get to meet so many other people with CF and hear their stories!

I have to say that I didn't say too much in each session beyond introducing myself. As I listened to some of the other people talk, I felt that I shouldn't share my story too much. Yes I have CF and that gives me several things in common with them, but I don't feel comfortable trying to get someone that's in their 20s with a 30% lung function to commiserate with me about just now having to start a "typical" CF protocol.

Attending BreatheCon 2016

At one session the discussion came around to some of these new CF drugs (that I don't qualify for because of my mutations) and how they've kept people out of the hospital and off of IV antibiotics for a year. How can I possibly come in and say that I've only ever been hospitalized and on IV antibiotics once in my whole life without sounding like a smug asshole? So I didn't say anything and just nodded in appreciation of how great these new drugs are for cystic fibrosis.

CF is already very isolating, but when you don't fit the "mold" of a person with CF it can be even more so. I walk this weird line every day, I'm not healthy because I do have CF, but I'm not sick enough to really be a part of the CF community and I'm not sure how to deal with that and I've honestly struggled with it for my whole life. I was really hoping to meet some other people in the same situation, but either they weren't at the conference or I just didn't end up in any sessions with them.

So I'm left feeling a little disappointed, but at the same time a little inspired by some of these amazing people that deal with so much on a daily basis and take it all with such grace. I can only hope that when it does come time for me to go through some of this I can handle it half as well as they do.