Thursday, May 4, 2017
CF Awareness Month Day 4 - Illness & Admissions
I was extremely lucky in that, other than the two short admissions when I was first diagnosed, I didn't need any more admissions for CF exacerbations until I was 25. I did break my arm twice, which required ER visits (I was a fearless climber), and the summer I turned 18 the doctors convinced me my sinuses were looking prettttty awful and I should have sinus surgery to clear them out and make new "windows" for drainage. I agreed (this was the "big" sinus surgery I sometimes refer to in my blog) and ended up holed up in the hospital for about a week recovering. During that time, they also placed a PICC line right before I went home so I could do an IV antibiotic to make sure any lingering germs in my sinuses were wiped out.
I was NOT HAPPY. From about the time I turned 15 or so, I developed this fear of and antagonistic attitude toward my doctors because I was so terrified one day they would say I had to go into the hospital. Even though I was a healthy kid, they started mentioning it more and more as an option someday, probably to get me used to the idea that one day I'd need it. I despised their cavalier attitudes toward the idea that CF patients often just needed a "little tune up." The way they tried to convince me it was no big deal. Therefore, after my sinus surgery, I was SO ANGRY that I had to get a PICC line. I felt like I'd been duped somehow. Those doctors...they finally figured out a way to force me to do IV antibiotics in the end. They're probably having some kind of victory party back at the office... I pouted. I cried. When at last I conceded that this was going to happen no matter what, I begged to be completely put under so I wouldn't know when they put it in. Of course, they said no to that. In the end, I got the PICC line, of course, and was sent home on 10 days of IV antibiotics (oooooh, the good old days of short-lived PICC lines!). The home nurse was waiting for us when we got home. To my eternal shame, I know I must have been snotty to her, because I resented everything about what she stood for, haha. (Poor lady - she held her own though, because I remember her being "rude" to me - probably just in response to how I was acting toward her!). I was so upset the entire 10 days. I couldn't look at the PICC line - seeing a tube coming out of my arm was so medical, I just couldn't handle it. I didn't want to touch it, or feel it, or look at it. I didn't want to leave the house until finally a group of my friends forced me to go to Starbucks with them. Their support and nonchalance toward the whole thing was one of the best things that could have happened to me.
I share this somewhat-depressing (but also hopefully somewhat-humorous - teenagers really can be childish and completely unreasonable!!) story just to give perspective on what it's like for kids and teenagers learning to deal with not-fun health issues. The good news is: I survived. I went on to college and didn't need any more PICC lines for over 7 years. If you're going through your first admission or first round of IV antibiotics, I know it sucks, and I know it's scary, and I know you might be depressed - but you'll be alright. Really. Truly.
After the sinus surgery and subsequent IVs, I went on to college and stayed relatively healthy for the most part. My lung function did start to drop toward the end, and I will forever blame myself for letting that happen because I was not at all compliant with my therapies like I should have been. Back then, though, a round of oral antibiotics perked me up almost instantly and made me feel like I could leap over mountains.
In my early twenties, right after college, I fell into a vicious cycle of needing oral antibiotics. Back then I only cultured MRSA and no pseudomonas, which wasn't ideal, but luckily that MRSA was super sensitive to all the typical treatments. Therefore, I would start to feel really bad, then take a round of bactrim or doxycycline, and feel better within 24 hours of starting. When you get to a point in life when you feel bad a large percentage of the time, and a little antibiotic pill can make you feel almost instantly better, you get addicted to the "feeling better." I knew the dangers of developing resistance, but I decided I didn't care.
Oftentimes at first, I would put off calling the doctor when I felt bad because of that ridiculous view I had that they were somehow my "enemies" (yes, this impression continued into adulthood) who wanted nothing more than for me to be sick enough to be admitted to the hospital. Anytime I went to clinic, it felt like it was a game of either tricking them into thinking I didn't really feel that bad, or bargaining to do my Vest more and take my vitamins if they would just give me another round of oral antibiotics. It was stupid, but the thought of being admitted to the hospital for a CF exacerbation was more than my small, silly mind could handle. Admission was brought up a few times, but I responded so well to the oral antibiotics and I was so deadset on avoiding the hospital, I always just ended up on orals again. Eventually, I was on a cycle of one month on antibiotics, one or two months off, then one month on, over and over again. Also eventually, pseudomonas strains showed up and slowly fought off the MRSA so that now all I ever culture is pseudomonas. Unfortunately, my sensitivities to oral antibiotics to fight the pseudomonas were not as strong.
Then November 2011 happened. I was 25, and still super resistant to the idea of being admitted to the hospital. But toward the end of my first semester of law school, I fell into a nasty pit of health. The oral antibiotics weren't pulling me up like they used to, and I felt really, REALLY awful. At long last, I tearfully called my CF clinic right before my final exams and told them I thought I needed to be admitted to the hospital.
And so, that was my first true CF admission since I was 2 - not a bad run, but it still killed me a little that I needed to be there. It felt like the "beginning of the end." I know that's very dramatic sounding, but if you or your child starts to feel that way when a hospital admission becomes necessary, know that it's a normal feeling of grief that you just have to work through. After two weeks in the hospital on IVs, I felt amazing. I was ready to take the world by storm. I remember thinking Is this what "normal" people feel like ALL THE TIME?? This is amazing! Unfortunately, that peak was short-lived and about a month later I started feeling bad again - this time the infection came on with a vengeance, and I ended up back in the hospital just two short months after being discharged and feeling "healed." That was a difficult admission, too, because I felt like I was going to have to start accepting that this was my life now - hospital admissions every few months, like so many other adult CF patients. I struggled. But, after 10 days and another sinus surgery, I was feeling on the up-and-up again. I went home feeling strong, and stayed strong for over a year - I didn't even need any oral antibiotics! It turned out to be a great year, and also the year I dated and got engaged to my husband.
Since that time, I've had a number of PICC lines and hospital admissions. Thankfully I've also learned to view my CF doctors as being for me and not against me - they listen to me, and want to help me feel better, and together we work together to come up with a game plan to get me as healthy as can be.
Unfortunately, my bacteria is now resistant to almost all antibiotics, including all the oral ones, so anytime I have a serious flare-up I have to do IV antibiotics. It can be scary to think about at times, but honestly, you just have to take life as it comes, love the life you've been given, and keep fighting. If the thought of reaching this point of your disease scares you, let me assure you there is still lots of joy to be found and life to be lived - you just have to work a little harder on your health and accept it as it comes. Since that admission in 2011, sometimes I've gone over a year without needing IVs, and sometimes I've gone 2+ years between hospital visits. Other times I've been in the hospital or on IVs 3-4 times a year. But I've also lived a lot of life in those years. You really just never know what curveballs this disease will throw you, but don't forget there is also joy. And hope. Lots and lots of hope.