Hotel ER

As a person with CF I avoid the emergency room at all cost. I don’t want the germ exposure and maybe even more importantly I don’t really trust the emergency room staff with my CF. I have found most people with chronic and complex diseases are weary of general doctors because of the complexity of our conditions that are not always understood by those in the medical field that are not specialized in our disease. A perfect example of this is the time I went to urgent care because I thought I had a kidney stone. I did not have a kidney stone, but they wanted to find the source of the extreme pain I was in and decided to do an x-ray of my lungs just to be sure. The doctor came in after a very long wait (especially for a very slow urgent care) and admitted he had never seen an x-ray of lungs with Cystic Fibrosis so he wasn’t exactly sure what looked normal for my already severely damaged lungs. I appreciated his honesty, but it highlighted exactly why I do not bother with non CF specialists.

As much as I avoid the ER, unfortunately is isn’t always avoidable. The other day I woke up in the morning and my arm had the sensation of being asleep (pins and needles). I assumed I slept wrong so I shook my arm to try to wake it as I got out of bed. After getting breakfast ready I realized that my arm was still tingling from my elbow to my fingertips. The pins and needles feeling seemed to come and go as the day went on. Like all medical problems as the evening went on the tingling got more severe. Around 10pm a blue vein started to bulge from my upper arm and the veins below the bulge were all much more pronounced than my other arm. I have a port which puts me at higher risk of blood clots. This knowledge in combination to losing two friends with CF to blood clots I decided to call the on call doc just to get his opinion.

The doctor confirmed that these symptoms may be due to a blood clot and I should go to the emergency room right away. I had to call my husband who was at work. He had to quickly find someone to cover his shift while I called my sleeping dad to come and stay with our daughter. I didn’t get to the ER until almost midnight. I had a quick assessment by a nurse at intake who said he could see swelling in my arm, although I wasn’t sure I agreed.

I knew going in that the wait would be long. However because the doctor was adamant that I needed to get to the ER right away and the fact that he said he “would let them know I was coming” I assumed the wait wouldn’t be obscenely long. Oh, how I was wrong. The hours ticked by and we weren’t actually seen until 5am which made me wish I had just waited until morning. Clearly the ER staff wasn’t worried about the clot breaking loose and wreaking havoc in my body and I wish the on call doc hadn’t made such a fuss. When they finally called me back they threw me in a bed in the hall where an ER doc told me that the ultrasound tech would not be available until morning and so there was nothing they could do at the moment. I was so irritated that I spent the entire night awake in the ER when there was absolutely nothing they could do for me. However, at this point they told me to stay because I was only a few hours away from morning. I sent my husband home to relieve my dad, especially since my daughter would be waking soon. And eventually I was taken out of the hall and put behind a curtain where I tried to sleep.

A few hours later, 7:30 am, I woken for my ultrasound which turned out to show absolutely no clot. I was not given a theory as to why my arm was numb and bulging and was released. I was so exhausted at that point I wasn’t able to think clearly and was just so grateful to get home. So I basically sat in the ER for 12 hours only to find out there was absolutely nothing wrong with me! I am eternally grateful that I did not have a clot which meant I got out of the hospital faster, did not need blood thinners, and was absolutely fine. The results could have been much worse leading to more worry and treatment. I do not want to sound ungrateful because I really am. However, I was a little annoyed that I( spent 12 hours through the night in the emergency room when there was absolutely nothing wrong with me! I had numbing for a few more days and as quickly as it started, it stopped and I will probably never know exactly what happened.