I arrived home late yesterday (October 8) after five days in the hospital to perform tests to rule out extenuating infections that would interfere with the consensus among my doctors that my Still’s disease is out of remission.
I’m now home, taking Prednisone in preparation to go back on the IL-1 gate blocker known as Kineret (also: Anakinra). I will know more after consulting with my rheumatologist in two days.
The hospitalization was—as usual—terrifying, but also enlightening. In addition to searching for scary goblins that might be lurking in my body, I was infused with many antibiotics to kill whatever might be present that could not be seen by Xray, CT scan, etc. Fortunately, I was found clean to the point that Still’s could be ruled out through the process of exclusion and with the corroboration that the temperature spikes were quelled with the Prednisone (and without Tylenol).
The Prednisone is magic stuff. It works great. But I hate it and I’m deathly scared of it.
In a more general sense, the hospitalization—which I have deftly avoided now for 40 months—demonstrated some serious glitches in the obligatory nursing schedule. The major one is the timing of meals.
To feed all the patients, a massive food delivery service operates, and it is very efficient. But this does not allow for my personal need for intermittent fasting. As a rule, I do not break my fast until about 14:00 daily. And the hospital supplies the first meal at 08:00 with the nursing staff wedded to this as a start point to begin oral medication as most are to be taken with food in the stomach.
At home, I try to finish all my daily eating within six hours. With this approach, I have successfully lost 15 pounds in the past three months, lowered my blood sugar to a consistent 85, enhanced my creatinine and eGFR measurements, and dumped two blood pressure medications. Within five days, the hospital schedule has wrecked this to a degree. Brenda and I are now re-establishing our successful routine. If I had been hospitalized much longer, I would have been much worse of a mess.
One might ask, “What provoked the Still’s from its remission?”
My rheumatologist has been watching some exotic lab markers for a while. Other doctors have not taken them seriously, nor have I. Perhaps her suspicions were warranted.
Also, she believed that I had too quickly tapered off my Kineret 10 months ago. The other doctors who were more experienced with both Still’s and Kineret believed—at that time—that a slower tapering was unnecessary.
Perhaps the Still's was triggered by the diverticulitis I was treated for in the ER the week before my admission with recurring evening fever spikes (hallmark of Still’s for me).
I have not worked out for about six weeks. You might remember that the open IL-1 gate was first associated (a hunch) with my TSC workouts by my ER friend… The diagnosis of Still’s disease was made by my official rheumatologist.
For sure, I can’t work out for a while.
Wishing you a brief recovery, Ken.
Ken, best wishes for a quick stay and full recovery.
Regarding the absurd primitivity of hospitalization-food: when my father was recovering from heart surgery last year his breakfasts were french toast, apple cinnamon muffins, orange juice, etc. No lunch or dinner were ever served without desert, which they gladly doled out in extra portions upon request.
All this after he’d managed to bring his A1C down from 7+ to 5.5 WITHOUT medication but by simply limiting sugar, starch, and carbs generally. All this progress they gladly flushed down the toilet.
While in the hospital they were giving intravenous insulin -- but he isn’t an insulin user! Perhaps there’s some medical reason insulin aids in recovery from heart murmur surgery, and is therefore advisable? Don’t know, but regardless it seemed necessary to mitigate the Frosted Flakes they insisted on feeding him.
Wishing you well!