Thursday, August 18, 2016

Crazy week, crazy life

I like to make life difficult. I try my best not to, but it just always happens. Sorry friends and family who have to deal with me ;). I think it's part of the cystic fibrosis code that nothing health-related can ever be easy!

I started on IV antibiotics on August 2. By this point, I had been on oral Bactrim for 3 weeks and a course of prednisone to help my struggling lungs. My lung function was down to 49%, down from 60% in May. The plan was to start IV Ceftazadine and IV Levaquin for 3 weeks, which would finish just in time for my fall semester to start back up. At the beginning of the IVs, I felt like I was coughing up a lot of gross stuff and getting the excess mucus out of my lungs. However, I did PFTs again a week after starting the IVs, and the results were disappointing. Even though I had been doing 4 breathing treatments a day and exercising twice a day, my PFTs had gone down to 45%. My doctor checked my most recent sputum, and the sensitivities to the antibiotics had changed. We decided to change IVs to IV Bactrim and IV Meropenum. After several days on that regimen, however, things still weren't really improving. I was running a fever off and on throughout the day and night, and I was very short of breath. I wasn't coughing up much, but I lacked energy and just didn't feel like I could breathe. On Sunday after having a fever of 102 during the night, my doctor wanted me to be admitted to the hospital to figure out what was going on.

If you know me, you know I do not go in the hospital unless I have to. My parents have always encouraged home IVs and know that I will get the most rest and recovery benefit from being at home. However, we had to figure out what was going on. We drove all the way to the hospital and attempted to get admitted (note that I say "attempted"). We had to go through the ER to be admitted since it was a weekend, but the ER truly had no idea what to do with me. Thankfully, I have a very assertive mother, and she told them exactly what to do and how to best protect me from all the disgusting ER germs. We eventually got a room and settled in for a very restless night. I ran fever that first night in the hospital, but there were no orders for Tylenol in my chart. My nurse called the on call resident, and he said they wanted to "max out my fever". Whatever the heck that means. Yet did anyone ever come back to check my temperature? The answer is no, of course not. Instead, I woke up with a huge headache and still no answers.

On Monday, we got all the test results back. My blood was fine, and I had no sign of bad infection. My chest X-Ray from before my IVs showed a pretty clear spot of pneumonia in my right lung, but my X-ray from my ER admission showed that had cleared up. So no more pneumonia-woo!! My CT scan, which is a 3D scan of the lungs, showed what they call "ground glass". That could be a sign of inflammation or can be the after-effects of something like walking pneumonia. Regardless, the treatment is heavy duty steroids. It was good to see my doctor in the hospital and talk through why it was taking me so long to recover this time.

However.....

I HATE being in the hospital. The level of incompetence is indescribable. I won't begin to bore you with the details (and I'll get mad if I start thinking about it again), but the number of mistakes they made in my brief hospital stay was ridiculous. I'm pretty assertive when it comes to my health, and my mom and I both demand the best, so we're not going to put up with any mistakes. I also hate how germy the hospital is. There were 11 other CF patients in the hospital when I was there. Not including all the other sick people. I have gotten new bacterial infections in my lungs after being in the hospital before, and I do not intend for that to happen ever again.

Long story short, I got out of the hospital Tuesday morning as fast as I could. I am on a high dose of steroids (prednisone) and will finish IV antibiotics on Tuesday. I will do PFTs on Tuesday and reevaluate how things are going. I am already feeling better. I haven't had fever since that night in the hospital. I went to the gym yesterday and felt like I could breathe a lot better. My fall semester starts on Monday, so I'm cutting it pretty close. Gotta keep things interesting in my life!

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