Friday, June 10, 2016

A little too much excitement today

Day 1 of cycle 2, and my first round of moxe, yesterday were very uneventful. The infusion was fast, and the only side effect was feeling very tired from the Benadryl to avoid an allergic reaction. I slept about as well as you can waking up every 2-2.5 hours, and was looking forward to a shower, visit with a friend from college, and then getting a pass to go out to lunch with my parents today. Unfortunately today turned into another one in bed, and lots of extra tests.

The saga of today started with the Physician's Assistant Technician (PAT) coming in at 5:15 am to get my weight and vitals. I went to the bathroom quickly, she got my weight and then we started on the vitals (blood pressure, temp, pulse ox). I get orthostatic vitals taken every morning, which means they are taken first when I am laying down, then when I am sitting up and then when I am standing.

Everything was fine until we got to the standing part. I thought I was dreaming. I opened my eyes and was laying upside down on the bed, and was not sure where I was. It took me a minute to realize I had fainted. I think it surprise the PAT too. It was after I said I fainted that she called for the nurses and help.

One of my favorite night nurses came in and looked at the blood pressure machine and said my pressure was 48 and that was not good. I reassured her my pressure was usually low thinking it was something like 80/48 vs my more normal 90/60. A little later realized it was 48/37... which is very not normal for anyone.

They had me lay down then we tried the orthostatic blood pressure again. By the time I sat up I remember saying I felt nauseous then down I went again. The nurse quickly elevated my feet, and called for fluids. Then my heart rate was also low, and I looked kind of gray so she called Code Blue on me. 

Luckily another nurse had warned me that Codes are called here more frequently then for someone's heart stopping, but kind of freaky to hear that happening. Two doctors, a lot of machinery and a few more nurses arrived. They did an EKG and as soon as it was clear I was stable they started asking why I was here.

My nurse explained I was on the moxetumomab trial... both doctors quickly said I have no idea what that drug is. (This is hard to get use to being on a drug so new that most doctors don't know about it.) The consensus was I was low fluids in my veins despite my 6-7L of water in the last 24 hours. 

This is the first (and second) time I have ever fainted, but two of my sisters have a history of fainting from standing up too quickly, getting their ears pierced, etc. So I have seen them faint a lot, and it sounds like what the nurse described (e.g., eyes rolling back in my head) was what I had seen over the years with my sisters. Luckily both times I passed out on the bed and did not hit my head on anything hard.

After many tests this morning, and stepped up surveillance of the NIH team, I am feeling much better.  My doctor is out of the country on vacation but was called, and later in the morning he called me. We agreed I need to target for 9L of fluid and just deal with the facial swelling, and side effects it causes. My eyes are watery which was the first sign of the swelling so hopefully my eyes are not swollen shut tomorrow am!!

Chad, and my parents, convinced me on the way home for Cycle 1 to do wheelchair assistance. It was key to me making it home without collapsing. I was hoping I could make my way between gates by myself for this cycle, but it is looking like more wheelchair assistance is in my future.

Hoping for a few boring, non-eventful days here at the hospital....

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