Too much excitement for one week

To some degree I measure my health status by the frequency of my visits to the emergency room. I made it to over 10 months, but last Friday broke my streak.

It's been a tough time with pain and breathing problems, but Friday night was different. I'd had a very quiet day, nothing strenuous (my usual trigger). Just hanging out on the couch watching Coronation Street (the only show that I hate to miss! Blame my first roommate Laura for getting me hooked as a teenager).

Suddenly it felt like my chest was freezing up. No air in or out for a few seconds. It passed. This has happened before, alarming for a few seconds but then it's over. But this time it happened again a few minutes later. Then again, with less time in between and more forcefully. Until I could hardly stand up. When I have an arrythmia it often helps if I make myself cough, but this wasn't working. Nothing seemed to help, and it felt like I was suffocating. Is this what drowning would feel like?

My husband called 911, and a fabulous group of paramedics and EMTs showed up at our front door within a few minutes. Thankfully after oxygen, several doses of nitroglycerin and a few hours in the ER, my breathing was back to usual. Still a bit difficult but nowhere near as frightening as it had been hours earlier.

This episode scared the heck out of us. I don't want to think negatively, but I suspect this might not be the only time this will happen. Having Erdheim Chester Disease firmly entrenched in my heart is going to cause problems. Lately it's been a wild ride of low to very high heart rates, low to high blood pressure - my heart just can't seem to decide what to do. Can't blame it for having a hissy fit last Friday I suppose.

I talked to my specialist today, he told me that I probably won't be prescribed the drug I'd been hoping to try (Kineret), that the team would rather I try a chemotherapy drug that has been effective for slowing down the progression of lung cancer (I don't have lung cancer, but then again ECD treatment is hit and miss, maybe it might help to reduce my symptoms).

I'm just not happy about that prospect. I'm digging up all the info I can find on both drugs so that I can make an informed decision about the chemo option. But I REALLY don't want chemo. Really, really don't. Shall I say it again?

Wish me luck over the coming weeks, my doc today instructed me to go cold turkey on the prednisone. 3 mg to nothing. One one hand, I'm thrilled at the prospect of getting off of this stuff, more side effects than I can count on all fingers and toes. On the other hand, dropping one mg at a time had been difficult, the withdrawal process has been rough. But looking at the big picture, I think I'd rather take a big hit of withdrawal symptoms for a few weeks rather than keep dragging this out over the next few months. Plus vanity plays into this a bit - I'm tired of carrying this extra weight - and the last thing I want to do is buy warm weather clothing for this larger size! So here I go.... three, two, one - deflate!