This—along with pureed soups or very occasional pureed solid food— is what I’ve been surviving on since last September. After speaking with my nutritionist around the first of the year we realized I wasn’t getting nearly enough of it (hence, why I dropped nearly 60 lbs.) and she upped my intake to 7 cartons a day (twice what I’d been doing). Easier said than done, because it seemed my stomach had shrunk and now barely tolerated two cartons at a time. She suggested I split up my feedings until I can go back to three, 2-carton “meals” a day.
This was unacceptable, so I didn’t. I powered through two cartons three times a day with a “snack” in the afternoon.
The problem was this shit is boring as fuck. It’s unflavored, and as unlikely as it seems, even with tube feeding I still have a (vastly diminished) sense of taste of what goes into my stomach even if it doesn’t take the usual route.
I told the nutritionist that in addition to the isosoure, I was supplementing my diet with Premier Protein drinks. She checked the nutritional values and suggest we up the game. She had a sample case of Kate Farms vanilla and Boost High Calorie chocolate sent to me.
Initially I preferred the Boost. The Kate Farms didn’t sit well and seemed to cause more reflux than I was willing to deal with. But once again, I powered through and came to prefer the Kate Farms over the Boost. When I spoke to her again last month, I asked if we could ditch the isosource completely and do Kate Farms exclusively. The Kate Farms is hella expensive (even discounted on Amazon it’s still $60 for a case of dozen cartons) so it would be great if my insurance would cover it like it did the isosource. She said she’d check with the vendor and my insurance to see if it was covered.
Turns out it was, so the next shipment I receive will be exclusively Kate Farms. I’ve discovered it mixes extremely well with my morning iced vanilla (or lately orange vanilla) latte, boosting my caloric intake even more. Both it and the isosource (I still have about 8 cases of 24 cartons each so I’m going to be using that for quite some time regardless) mix well with the Premier Protein drinks, so yum!
So by mixing all this up and throwing in some pureed real food on occasion…
…I get enough variety daily and since my stomach has now stretched out to the point where I can handle more than 16 oz of material at a sitting, I’m consistently reaching my nutritionist-set daily caloric intake of 2.7K calories and often reaching above to more then 3K calories a day.
Have I gained back any weight? Not that I can tell, but I haven’t lost any more, so that alone is a good thing. Putting any weight back on is going to be a long, arduous process.
In other health-related news, my endocrinologist has upped the dose of my thyroid medication (my last TSH test was through the roof) and my energy level is back to “normal,” and I’m no longer falling asleep at my desk or while watching television. I’m also sleeping much better.
Insurance approved my dermatologist’s request to put me on Duplixent for the Keytruda rash. The current therapy of prednisone and cortisoid cream has helped greatly and the skin eruptions are healing nicely, but the generally accepted therapy for getting rid of Bullous pemphigoid completely includes Duplixent. The first double dose, as I mentioned a few posts ago was administered at the doctor’s office as a “sample” and the first of many followup doses due next week—through insurance—was $1K and satisfied my remaining yearly out-of-pocket Medicare Part D requirement. The good news is that because of that—and those two week-long stints in the hospital in April—I shouldn’t have to pay for anything health related for the rest of the year.
Yay, ‘murika?
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