Jeff sat over his pile of morning pills, his “second breakfast”, while our 4-year-old granddaughter observed.
“Grandpop, which one is your Grumpy Pill?” she asked.
“This half of a pill,” Jeff told her. He splits a 20mg tablet of Prednisone and he thought she was referring to the pill with the unfortunate side effect of irritability.
No wonder he is grumpy sometimes. From the start of his day taking care of himself is a time-consuming and frustrating series of tasks. Donning compression stockings (while gloved to protect his weak fingernails), injections (twice a day for 10 days earlier this month), wound care (dressing old and new wounds), creaming his face, swishing his mouth, flushing his PICC line and taking a mountain of pills. He contends his morning ritual is much more involved than doing hair and make-up.
And wounds happen so easily, each one an additional wound since the old ones don’t really heal completely. He even injured himself while sleeping. A tug on the blankets and oops! His hand slipped off and he gave himself a fat, split lip. I heard him mumble, “Yeah, that’s not going to heal.”
Bone marrow biopsy results were a bit of a let-down even though there was good news – no evidence of leukemia and his blood is 98% Donor Nicole’s! There was also no indication of why Jeff’s platelets have been slowly, steadily dropping for months. Still, Dr. Porter was pleased with the results so we tried to be okay with it, too. I told Dr. Porter that Jeff didn’t seem as well as he did three or four months ago. He and Nurse Heather said medications and everything he has gone through could account for that.
But… things suddenly began turning around.
When edema suggested – and an ultrasound confirmed – blood clots in his leg, Nurse Heather asked, “Have you ever given yourself an injection?”
“Not on purpose,” Jeff quipped.
Heather laughed and said the home nurse would provide injection instructions. However, the home nurse wouldn’t visit for another four days and Jeff needed to start the blood thinner immediately. After negotiating with the pharmacist to pay out-of-pocket for three days’ worth of syringes pending insurance approval, we watched a YouTube video on self-injecting and Jeff was set.
The video said to avoid injecting in the same spot. Hmm. How to remember the location of the previous injection site? We needn’t have worried. Jeff woke up the next day with a five-inch purple circle marking the spot. Fortunately, that didn’t happen every time. Boy, did he bleed! The sheets, towels, light switches, faucets, doorknobs and Jeff’s clothes all had what Jeff called “(Donor) Nicole’s precious blood” dripped – and flooded - on them. The injection sites bled through the Band-Aids and each day, of course, another couple of Band-Aids were added to his belly. They did not sufficiently contain Nicole’s viscous gold. I am glad there was no reason for CSI to visit our home. There would have been questions.
There is still some edema but Jeff will take blood thinner in pill form for several months. And the marked improvement in platelet counts (due to the blood thinners, maybe) satisfied Dr. Porter enough to order removal of the 15-month-old PICC line! Merry Christmas to Jeff! No more weekly blood draws, no more silicon shower sleeve. Extra medical supplies donated to the local animal hospital. Done.
Another recent success was with dermatology. Jeff had the worst flare-up of his painful, bumpy, red face on a day he was scheduled to see Dr. Porter in November. It was so dramatic that Dr. Porter noticed it while passing the exam room that Jeff, well-masked, was waiting in.
Dr. Porter immediately sent pictures to Dr. Samimi, the dermatologist. Dr. Samimi’s biopsy of one of the bumps showed three things going on: yeast, mites (he has cooties) and folliculitis. She switched Jeff’s treatment from Ivermectin cream (which burned his skin) to Ivermectin pills instead. The insurance company required pre-authorization. Isn’t “authorization” given when the doctor prescribes it? Anyway, insurance will cover only 9 pills in three months. His entire course was only a week, “seven pills today and seven pills in a week”. Fortunately, it was inexpensive and since Jeff’s condition was acute, we just paid for it. Why, you might ask, does the insurance company have to pre-authorize a drug if it isn’t expensive? Evidently it is because of the mis-use of Ivermectin for COVID. The good news is, Ivermectin seems to have worked. His face isn’t completely normal but it doesn’t hurt anymore and looks a whole lot better. Recent pictures of Jeff’s improvement impressed Dr. Samimi. “Drop Prednisone to 5 mg,” she messaged. Woohoo! Grumpy Pill, halved!
Dr. Porter says that Jeff might have adequate antibodies for COVID. The antibody test that was done in April gave results that seemed less than stellar but at that time not enough information was known about what constitutes a good number. Jeff, now having received three full doses of the vaccine all while immunosuppressed, is still not comfortable taking too many risks. He can do without COVID, thank you very much. So when I had another potential work exposure four days before Christmas, we isolated from each other per CDC guidelines for households with someone who is immunocompromised. We are in separate bedrooms, use separate bathrooms, eat in separate rooms (though within talking distance). Jeff cooks and handles clean dishes and clean laundry; I handle dirty dishes and dirty laundry. We each contributed to our Christmas dinner but we cooked our respective dishes by taking shifts in the kitchen. We go for walks – masked and socially distanced – so we can be together sometimes. We are trying to make the best of the situation while awaiting my PCR test results - just a few days.
We hope that you are making the best of the pandemic, too. Merry Christmas and Happy New Year!
