I am a hater

I have complete respect for anyone who has the mental fortitude and positive attitude to be grateful that they have cystic fibrosis.

I am not that person.

I hate cystic fibrosis. I hate having cystic fibrosis.

I have a great life. Without cystic fibrosis I would have a spectacular life. Not just because I wouldn’t have it, but because the friends I’ve met on Twitter wouldn’t either. They or their children would be in perfect health and our tweets wouldn’t include words like “fever” or “antibiotic” or “nebulizer” or “new lungs.”

Fun in the ER

Today, I spent six f’ing hours in the ER. For weeks now, I’ve been having 6 to 8-hour episodes of not feeling well. I feel jittery, nervous, my heart doesn’t beat right, sometimes there’s SOB, chest pains and aches, and I have trouble swallowing. If I had a gun in the house, I wouldn’t be writing this. Trying to work at my job, which is high stress and requires a great deal of concentration and creativity, is the mental equivalent of working in a Chinese coal mine.

I know anxiety kicks in and is part of it. However, it starts with something else, not the anxiety.

I had high hopes for the visit. The ER is all-new and spectacular. Thanks to my SOB and chest pain, I was escorted to triage right away by the maitre d’hospital. They even surprised me with an immediate EKG, as the nurse took my vitals and looked over my drug list. Then they whisked me to my room and hooked me up to a monitor. Super service. All was great, like a Broadway musical, but without the singing and music.

Enter Mr. Killjoy

The musical ended quickly when I drew the short straw of ER docs and received a crappy one – the one assigned to Friday at lunch because no one comes in at that time. A coldfish of doctor with zero enthusiasm, who probably should have been a coroner instead. Usually, the ER docs are friendly and curious about CF and ask lots of questions, run tests. Not this guy.

After a very brief talk, he disappeared for five hours or so. Tick tock. Did I say how much I hate CF?

Finally, he showed up, hand sore from all of the paperwork he must have been doing, and told me he recommended that I stay overnight for observation and a stress echo in the morning. This was checking the box. It was “I haven’t spent any time talking to you because I’ve been busy for the last five hours, so the best thing to do is keep you here another 18 hours. And someone else will follow you and ask the questions I should have.”

I told him I had a stress test less than a year ago, which he wrote down. Hmmm, perhaps, he could have asked that question, had he thought it was a good idea to ask any questions.

Pucker up

That’s when I made a tough executive decision. I declined to stay. That’s the part where your balls get really big because you’re either stupid or brave – stupid in my case. But that was my medical decision. How could he base any decision on the limited information I gave him?  When he left the room, I called my doctor to confirm it was the right decision – he agreed the risk of leaving was low.

The nurse came in and hinted that the doctor was conservative and he had been really busy that day. Argh, if I bang my head against your new walls, will you make me clean the blood from them?

I left.

When I got to the car, I had a panic attack from leaving and had to text and talk to my doctor again to make sure I wasn’t going to die on the spot. This could be my last post, BTW.

My doctor thinks my thyroid might be out of whack based on what I told him. Why didn’t the ER doc think of that? Because he didn’t ask questions and wasn’t curious.

A silver lining

My first nurse requested that I be her patient when I arrived. She overheard that the guy in the mask, which still confuses them, had CF. She has a brother with CF. He lives in southern Los Angeles, is in his 30s and goes to the same clinic I do. It came up that I have a child. She said he wants to have a child but has the usual male concerns about if he can have a child. I explained how science helped me with a procedure she said her brother didn’t know about. During her lunch break, she called her brother and told him. She said he screamed with joy that he and his fiancée might yet have a child. There was hope.

It feels like the reason I went to that ER was for that purpose, to share that information with a wonderful nurse and her brother, who may have been at clinic on the same day I was there. However, he needs to do a little more research and not wait for a crazy man to show up at the ER to tell his sister what’s going on. So says Fox.  Oh, well. At least, something positive came from the visit – lemonade from lemons.

Stay well.