“Wow. You had bacteremia and no fever and no elevated wbc??”

I don’t know if it’s exciting or not to be stumping people at the N.I.H….

She couldn’t believe it. Here I was, talking with the scheduling nurse at the National Institute of Health–what I’ve been hoping for, for years has finally started in motion–

and here she was, she genuinely stumped when I started sharing some of the events over my life.

“Since you had no fever and no elevated wbc, how were your doctors able to determine you even had bacteremia? How did they think to even look for it?”

“I told them I was dying. I could feel it. Plus my blood pressure was falling.”

“So they admitted you for being septic?”

Well, it didn’t exactly happen that way. I was actually already admitted into the hospital at St. Joseph’s in Burbank when my blood pressure started falling, where they actually filled me up with salt water and then discharged me anyway (because I didn’t have insurance at the time?), only to be sent home to die when the call came in that my blood cultures that were drawn during the hospitalization two days earlier, were indeed positive.

But I figure I’d spare the N.I.H the gritty details that inevitably lead to a political rambling on my part, so I gave her the shortened version of the story,

“yes, they admitted me for being septic.”

Wow wow wow.

I think I’m more wowed than she is. I’ve had a good impression for awhile how unusual my case is,

(all these doctors wanting to commit me can’t all evil 🙂

But hearing this nurse’s reaction to the story of my case, along with my conversation I had with the N.I.H doctor directly on Friday,

really tells me how rare my medical case really is.

Once in a lifetime, we have arrived.

Together, hopefully we can solve it. 🙂

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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