A week since I've posted. I've been on a steep learning curve in terms of the new habits I've had to form. One is being up and sensible by 8:00 a.m., when I take my first dose of immunosuppressant. Then remembering the second, different, immuno at noon. The third at 8:00 p.m., which it is right now . . .
Counting these, I take 40 prescribed pills every day, having to spend an hour once a week distributing them (and double-checking that they're right) into a special pillbox the major med pharmacy sent, with four slots for each day.
I'm also taking 2 extra-strength Tylenol 3 times a day. All told, that means pills at nine different times of the day. I am supposed to use a prescription sort of mouthwash four times a day to prevent the mouth sores or thrush some people get from one of the immunos and the two antibiotics, but I confess to getting casual about it, and just using it at bedtime. I need to get better about that.
First thing every morning you weigh yourself in near-identical circumstances (i.e. always naked, or always in pajamas), and write it down. Evaluate: if you've gained two pounds, call your nurse. You're holding water, that could be a sign the kidney's not doing its job. Then there's taking vitals four times a day - blood pressure, pulse, and temp - and writing it down. If these are stable, you're not in rejection, a very real possibility in these first months. Every day, enter one of yesterday's vitals on the electronic chart. If one is weird, enter that.
Being a scientist, Tom made a chart of all my vitals, and it showed us that every day I happen to catch one where my BP and pulse are too high, so Monday we'll be going to the cardiologist. Maybe the immunos are interfering with the medicine that keeps me from going into atrial fibrillation again. The nurse instructed me exactly when to know it's time for the ER. I told Tom that if another fib starts, get the squad here, they carry oxygen. All this is scary, but there's only so much you can do about it. On good days, I understand that fear is about a mental construct of a possible future, and that I am safe right now. Also, the heart hospital is just short of being a Hilton.
I'm forgetting something. Oh, go to the transplant center, which fortunately is only 15 minutes from us, and get labs drawn twice a week, exactly two hours from that first dose of immunos. They're measuring lots of levels. The important one is creatinine - mine is as good as yours, if you are a healthy person with no kidney damage. All you need is one good kidney. Remember that when you consider saving a life by being a live donor.
And then there's drinking three (3!) liters of water a day. Trying to set up a system to make sure you do. And getting refills from two distant and one local pharmacy. Following the transplant e-list. Trying to slowly, carefully increase activity. I intend to drive tomorrow, a short trip, if the terrific pain in my right lower back keeps diminishing. That was the result of very carefully trying a very basic exercise/balance class. If I were Elizabeth Taylor's dog, someone would have clearly mapped out an exercise plan for me.
Inbetween that you deal with the exertion of taking a shower, the super-exertion of washing your hair. Eating. Having clean clothes. Order clothes online, because you have a swollen abdomen and need pants that are really loose. Dealing with insomnia, caused by the immunos, and moodswings set up by the steroids. And finally feeling the anesthetic and the steroids leave your system, which leads to a big uptick in pain. No wonder I haven't balanced my checkbook or written thank-you notes.
And oh yes, daily very careful stretches/chi gong, and meditation. Yes. Important, second only to staying alive. Very important. It helps you remember that you are a little better every day - and this, too, will pass.