Admitted Again. . . 3rd Times a Charm, Right?

Here I am, back in the lovely facilities at St. Francis Medical Center. I had been feeling incrimintally better bit by bit and thought maybe I'd turned the corner on Sunday and was on the upswing; and then came Monday. I swear I took 1,000 steps backwards and felt nearly as bad as I did on the 14th when I was admitted for my second visit. Holy moly!

I had a post hospitalization follow up with my GP, Dr. Laura Glueck, already scheduled for Monday afternoon, so that was a good thing. I think she was very concerned about me so she ran another respiratory panel just to ser if maybe I'd contracted something else. I do think she and would have preferred I headed to the ER right then, but we agreed to wait to see what the results were & if I didn't feel any better Tuesdsy morning I'd go.

Turns out I still tested positive for the flu. Ugh! Tuesday I actually did feel slightly worse, but I absolutely did not want to go back to the hospital. I spoke with Dr. Glueck's nurse and she made me promise to go Wednesday if I wasn't better. By then I didn't have much of choice, so here we are.

My third hospitalization this month and I'm still testing positive for the flu. Even my doctors are confounded as to why it's taking so long to kick. I am immunodeficient, so that is playing a big part. Even after 31 weeks of IVIG therapy it still tends to take me a longer to get over even the slightest of bugs than most, so i suppose this flu hanging on shouldn't be surprising. I'm just beyond ready to be over it.

In this vlog I dipped a toe into the deep ocean of reasons why I, like so many other TBMers, hate coming to the ER. TBM is a convoluted, complicated, under diagnosed disease that behaves differently than any other respiratory disease out there. It's a mechanical problem, which doesn't show up in most tests. So all of the indicators that doctors test for to be able to admit you are commonly not found with us. The single most thing I hear multiple times per ER visits is that I have oxygen, so I'm ok. Alrighty then! Never mind the fact that I'm physically suffocating, which unfortunately does not show up in blood tests, x-rays or CT scans, but doesn't make it any less significant than if it did. The difference is that there's no "other" box to check on a dang insurance form, hence there's no identifiable reason on paper to admit me. Time after time after time it becomes an exhausting exercise of frustration. Therefore, we wait until we've tried every trick and tool we have in our special tool boxes and nothing is offering the least amount relief before making the treck to the closest hospital's ER. It then becomes a crap shoot as to which doctor you'll get whether they know anything about TBM, wants to try to understand it, or could care less about it and dismisses you all together because he can't check a box. Rather than being a comforting & reassing visit, it can become rather traumatizing at times.

There are so many stories to tell on this subject, I'll save those for a special report blog! Today's post focuses on yesterday's experience. As always, thank you for keeping up with me, supporting me, & praying for me. Have a joyous day

!https://youtu.be/NPJnc3SVVzE