Notes are below the list of meds.

DIRECTIONS and notes

Updated 7/14/24 – Hannaford Pharmacy in North Brookfield, MA. The pharmacists Sara and Danielle know him well.

Medications

ALL of his medications go through his feeding tube.

  • 5 ml Prednisolone every other day after breakfast – 8:30 – needs food in his stomach (can’t understand the dosage on the bottle, it’s written out weirdly). – PICTURE– calendar
  • 1ml Sirolimus – PICTURE – (1mg…REFRIGERATED) at 7 am on an empty stomach. He gets this on an empty stomach. His levels can be thrown off if you change this. The level should be checked monthly by Nephrology. The dose may change. Dr. Fan at UMASS knows the most recent dose.
  • 0.9 ml Mycophenolate – PICTURE – at 7am and 6pm.
  • 2-1/2 ml Levetiracetam 7am and 7pm – PICTURE
  • Testosterone gel 1.62% 20.25 mg. per pump, 2 pump presses once a day (1 to each shoulder area) – PICTURE

Supplements/Other

  • Vitamin D – 1,000IU in Nick’s afternoon snack
  • 20mg Famotadine 15 minutes before breakfast and 30 minutes before bed.
  • B12 – 250mcg every 3rd day or so. If he’s too wired, it’s probably too much. Ask to have his level tested by PCP every 6 months or so.
  • 1/32 – 1/16 teaspoon kelp granules in his breakfast for the iodine (he eats mostly plants)

To administer medications: All medications and any supplements are administered through his feeding tube except for the Vitamin D. Vitamin D gel caps can go into his food, whole. He can swallow the pill. 

I don’t have any syringes that fit his feeding tube other than the large 30ml or 60ml syringes that I use to vent the air out of his stomach. To administer his meds, etc.:

  • Prime his feeding tube with water with the large syringe.
  • Pull the plunger out of the large syringe and attach the syringe to his feeding tube.
  • Pour a little bit of water into the large syringe.
  • Squirt the medications into the large syringe.
  • Unclamp the tube and let the liquid run out of the syringe into the tube. Make sure that the medication is all in the tube, none in the syringe.
  • Detach the large syringe from the tube, draw up about 10cc of water, and flush the tube. Repeat this a couple of times until you’re sure all of the meds are now in his stomach.

Some Things to Note About His Meds

  • 1 ml Sirolimus (in the refrigerator) at 7am. Use the syringe that’s in the white case in the refrigerator door next to the Sirolimus. He gets this on an empty stomach. His levels can be thrown off if you change this. Sirolimus expires 30 days after opening. There are 60 ml in a bottle. The bottle won’t be used up within 30 days. ****Sirolimus goes in the refrigerator. It’s ridiculously expensive, so please don’t leave it out! The dose for Sirolimus changes. Dr. Verma is the doctor that follows his monthly labs. Dr. Fan is his transplant doctor and he will be the one to decide if the dose needs to be changed.
  • 0.9 ml Mycophenolate at 7am and 6pm. Mycophenolate expires in 60 days. There will be quite a bit left in the bottle when it expires.
  • 5 ml Prednisolone every other day after breakfast. Always with food. Never at night, it can affect his sleep. 
  • 2-1/2 ml Levetiracetam at 7am and 7pm. This is for seizures.
  • Famotadine 15 minutes before his breakfast AND half an hour before bed. Crush it (not fine) slowly dissolve it in warm filtered water in the large venting syringe, and put it through his feeding tube. It will take a few times of drawing up water and flushing through his tube to administer the whole pill. I know the bottle says do not chew or crush. I’ve spoken with his gastroenterologist about this and he says that it’s fine to give it to him this way.
  • Vitamin D – just put it into his food whole. He can swallow the pill.

I keep an updated list of meds and supplements on the whiteboard in the kitchen. You’ll find it hanging on the wall.