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.