I’ve Been Suffering and Starving It Out Alone at Home For 7 Years

Hospital times feel like a full time shift.

Before 8 AM, I had seen 3 doctors. I requested seeing my CF team too and was able to eventually (thank the golly g’s). I had a nurse advocate for me like the hero of the day (literal angels). I had potassium hung over and over and over as it was critically low and that’s apparently bad as a heart patient, and then again and again the next day as the first day seemingly didn’t work.

Even just one day requires things like samples (ew), imaging, multiple rounds of multiple teams of physicians - all playing out a West Side style turf war with less snapping (only CF wins, in my opinion. It’s their floor), and talking with dietitians.

The Respiratory Therapist came by for my current cocktail (albuterol and/or steroid, hypertonic saline, Pulmozyme). But that’s not why I’m there. Although breathlessness has been an issue for 2 holiday seasons now (testing will conclude why, but I have a pretty solid theory)…

To me, this hospital stay felt like it’s been 7 years in the making.

I believe EVERY hospital should admit someone who is having any sort of pancreas-like assassination (even if it’s more liver induced, like mine) and make sure they’re not suffering and ‘starving it out’ alone at home.

I’ve been suffering and ‘starving it out’ alone at home for 7 years…

And healthcare has no basic baseline for how they want to help patients do so without taking unnecessary risks, negatively impact their weight and strength and digestion, and monitor them as an act of compassion… not an act purely of care.

If not eating is what makes these attacks go away and is the gold standard, making many patients go to an ER to be turned away, or not having a consistent concept for how to reduce suffering and uphold help when healthcare “can’t help”… then what are we doing?

Unless a patient gets lucky and finds a physician who’s incredibly astute in there matters, or a hospital who is much more educated than the everyday… the everyday citizen is left to fend for themselves, defenseless and in danger of negative outcomes.

This is just a fact… but I don’t know how to fix it.

Write about it, I guess?

Speak about it if some physician’s organization somehow sees these words?

I’d do more to help the cause and those hurting from no standard of instruction, or education, or impotus for those struck by their pancreas and adjoining organs like the sphincter of oddi, bile ducts, liver…

But I’m too weak from not being able to eat to make this go away.

Share, Like, Restack in Notes, Forward to a Friend, Post on your Socials: All love is… well, more love going into the world!

(And if I can ever help YOU, let’s keep our karma paying forward and forward. So reach out?)

Now, let’s live another week together, shall we?