Just in case you ever wonder, "so, what's a 2 year post-tx patient's daily schedule like?" I present you mine (this is for a weekday):
6:20: Alarm goes off.
6:30-7:00: shower, dress, hair/make-up
7:00-7:15 (roughly): breakfast (usually cereal and coffee) and meds, which are:
--prograf (anti-rejection, 1 mg)--8:00 AM but I have a one hour window on either side. This gets taken Q12 (aka, every 12 hours)
--vfend, an antibotic that's given prophylactically (meaning to keep scary things from showing up. Most people are more dangerous to me than I could ever be to them.) This is twice a day.
--acyclovir, another prophylactic drug (twice a day)
--If it's MFW, Bactrim Double strength (DS)--my old friend! Also antibiotic.
--Slow Mag tablets, 4 at 200 mg each (the anti-rejection drugs mess with your metabolism levels)
--Prednisone, 10 mg, a steroid (leads to the puffy face...mine's not too bad...the tummy and the occasionally swollen fingers). It was 15 for awhile but I begged (not too hard) to have it bumped down. This MUST be taken with food or milk (like the bactrim) because 1) it tastes nasty and 2) if you don't, you get lovely stomach issues. And as we know, my stomach generally hates me anyway.
--Humalog insulin, usually 5 units, depending on what I"m eating> I get 1 unit per every 12 grams of carbs I eat.
--a multivitamin w/ iron (since I"m anemic--always have been)
After breakfast and the pill regime, I head to work. I'm there about an hour before everyone else to do the early morning paper clipping.
9:30: 2 hour post blood sugar check. Usually eat morning snack around 10 and am drinking water (flavored, of course. For some reason my stomach really doesn't like "regular" water.)
11:30: Lunchtime! That means imuran (anti-rejection med), which is due at noon (again, an hour window), and humalog (usually about 7, unless I do Chipotle, which is an 8 or 9. Thank God most restaurants now have carb listing on their websites so I can figure it out pretty accurately.)
1:00-3:30 (or 4:00, if a session day): work
4:00 (or 4:30/5:00): home. Reading, Bible, work-out, etc.
5:00-6:00: make/eat dinner. More humalog. And more slow-mag. Usually calcium supplement here, too, since I don't usually have milk with my dinner (if you take calcium supplements while eating dairy or drinking milk you don't absorb as much.).
EVENING: M--sometimes Parish Council, W: Choir 7-9 (longer as we get closer to Christmas or Easter), Spiritual Life, baby-sitting, etc., etc. If I'm "home," then it's reading, practicing my music, and/or writing/working on my extraneous projects.
8:00 PM: Prograf time!
9:00 PM (roughly): Lantus insulin injection--this is a "24 hour" kind of thing that keeps my blood sugar levels fairly steady.
Evening pills around now, if I"m home, or whenever I get back:
---lipitor (anti-rejection meds raise cholesterol, even in babies)
---MWF: the "pink" antibiotic, whose name I am forgetting.
---My second calcium
---The other 2x (Q12) drugs I listed in the AM.
So that is the drug regiment. BUT no more PFTs, nebulizers, etc! Huzzah!!!!!
I ma usually in bed by 10:30. I read/write in my journal before bed.
On the weekends I haul myself up around 8:15 to take Prograf, but other than that it's the same thing. Today I was at Branden's and gave myself insulin before lunch, as usual. Branden looked at me and said, "you didn't even flinch." I then explained that the only time the injections hurt is when you do it wrong (I.e., in the wrong place). Since I hardly ever do it wrong, it doesn't hurt. It's a small needle; they're designed to go in as smoothly as possible.
This may look like a lot but it's actually easier than the CF drugs were. I mean, my stomach would just KILL me on those. When I had MAC bacteria, I would be on a three drug cocktail. There was one time where it was those drugs, bactrim AND Cipro (which is strong and nasty. It's what they give you for anthrax!). Whew. That was nuts.
Of course there are occasional IV issues, but those are different story and I'm not jinxing myself by talking about them!!!
1 hour ago