Religious obligations aside, I've always felt that there was absolutely no reason anyone should NOT be an organ donor. As my mom always said, "I'm not going to be using it any more…" As a matter of fact, I've always thought it should be an opt-out process rather than an opt-in process.
Yesterday I was reading up on some volunteering opportunities to consider for this summer, and happened across some information that people who get regular IV infusions are more or less prohibited from donating blood. It's kind of ironic that the reason that I've overcome my fear of needles is also the reason I can't give blood.
To add insult to injury, it stands that if I can't give blood, they're probably not going to want my organs either. So I guess now I have to go down to the DMV and take myself off of the list. That's an embarrassing thought, for someone who's spent his entire life preaching the righteousness of organ donation.
I guess that means I have a better chance of becoming a cadaver for medical students or going to a body farm. Now where do I go to sign up for that?
So you will remember that last week I wrote about how
I still felt like poo. And I brought up one more instance of me being too lazy to take my medical status seriously. And you'll remember that because you then encouraged me to get in touch with my doctors, explain my situation, and get myself back on track.
Act 1: It's not you, it's me!
It's funny how when you tell your doctor that you haven't been taking the medication they prescribed, they act as if you don't have any idea how bad for you that could be.
So I prefaced the discussions with each of them by saying that I knew I had been an awful patient — fallen off of the wagon, so to speak — but that I knew it, and that I am trying to put that behind me and get back to normal. Truth be told, I have been horrible about taking my meds since we got back from Ireland in September. I've felt pretty darn great, thanks mostly to the Remicade. And it's one of those "out of sight, out of mind" deals — certainly not intentional.
I'm back on Fosamax for
my Osteoporosis – no reason not to just jump right back in according to the Nurse Practitioner at my PCP's office. Still on 1800mg of Calcium and 1400iu of Vitamin D a day, too. I'd drink milk like it was going out of style, if it didn't disagree with my stomach so much.
I spoke with Dr. R about my concerns over my last Remicade treatment, and he explained the tremendous set of checks and balances that they use to make sure that every patient gets the right meds, and that they use to inventory remaining medication every day. He even had someone check that the refrigerator they keep the meds in was still functioning while I was on the phone with him. He was very reassuring that I got my meds, and that they were actually
my meds. He also said he understands my skepticism and even though there's nothing he can do with it, ordered blood work to check the level of Remicade in my blood, just to make me feel better.
Dr. R also said that there is a small possibility that the vials used to mix my meds were not properly refrigerated during delivery — something they have no way to know before administering it to a patient — which would make the medication inactive, and explain how I've been feeling. If that is the case, I am more or less S.O.L. until my next treatment (on Feb 18th)! Since
NSAIDS can cause Crohn's flair ups, the only OTC pain medication I can take is Tylenol. Which let me tell you: Doesn't help an arthritic condition that much, if at all. So, to help me deal with the pain until my next treatment, he prescribed a very low dose of Prednisone — the same steroid that gave me Osteoporosis to begin with — for a few weeks. I told him how I was worried about it setting me back, how I was on Fosamax, Calcium, and D, and he explained that the dosage is so low and the period is so short (3 weeks @ 10mg, then 1 week @ 5mg) that there is virtually no chance of harm from it. Just to be sure, I ran this past the NP at my PCP's office and she confirmed that it should be fine to take.
Act 2: Billy-who?
While I was in the waiting room, waiting for my appointment with my PCP's NP, I got a call from Dr. L. He called because he had received some of my recent blood work results, and was concerned about my elevated levels of
Bilirubin. Dr. R. had already brought this to my attention when we met before my last Remicade treatment, and he ordered another round of blood work to check on the level again to see if it was fluctuating, and in what direction. He said that even if I had the syndrome he was checking for (whose name escapes me), there is no treatment for it, but luckily no adverse affects, either. Even though I explained all of this to Dr. L., he insisted that I get an ultrasound of my liver. So I have that to look forward to.
Originally, Dr. L. thought that the increased levels of Bilirubin were attributable to the Azasan he had prescribed me, but since I haven't taken it since September he did some (admittedly deserved) finger waving and concluded that it couldn't have been the Azasan. He did say that I could discontinue the Azasan, since I didn't feel it was helping and he was somewhat concerned about Billy.
Act 3: Take 22,000 of these and call me in the morning.
Pills, pills, pills. I wish medicine were an exact science. I guess I'll settle for being able to take stairs 2 at a time without wincing in pain.
Quiet weekend around here, eh? I hadn't intentionally taken the weekend off from posting, but I don't think you missed much.
We spent about $2,500 on Saturday. We finally found a bedroom set that we both liked, and it was 55% off to boot. We ended up spending about two thirds (at low estimates) or half (at high estimates) of what we thought we were going to have to, so we're thrilled with the deal we got. It's being delivered next week and I might work from home for a week after that just so I can lay in bed all day.
And what does a new bed mean? It means new pillows, that's what. I can't explain it. I don't even understand it myself. But I have had this idea that one of my pillows is all but worthless, and that I wanted to replace it…
when we got a new bedroom set. So now it's time and that pleases me.
Since we're going to have nice big (matching!) nightstands now, we went all out and bought… lamps! (Is he really writing a blog post about new lamps? Yes. Yes he is.) My nightstand right now barely has room for my clock and a box of tissues. No room for a lamp. Don't even think about a book, or setting my phone there for easy mid-slumber note-taking. On the new nightstand? I could have
two lamps.
Know what else we bought? What I've wanted since we bought our house? And have hinted at over and over and over? A garage door opener! Not only that, but I installed the bugger myself. Wiring and all. It took the better part of the day on Sunday, lots of patience, and 1 mid-install trip to Lowes for some lag screws; but it's done. And I didn't electrocute myself, drop anything heavy, cut or break anything, or fall off of the ladder once! I did snap the head off of one of my lag screws because the pilot hole I drilled wasn't a high enough gauge, but that being the worst of my problems, I think I did pretty well.
It's a belt drive (as opposed to chain or screw), which is super quiet. You can barely hear it through the door into the house from the garage, which is splendid because the room over the garage is the one we're planning on using as the baby's room… when we get pregnant… one day.
Now to totally switch gears…
My knee still hurts. A lot. Every day.
I was hoping it would feel better by now — I had my last infusion almost a week ago. After my first infusion, I felt better almost instantly; and after every treatment since then I have always felt better pretty quickly — usually by the end of the day at the latest.
I'm worried that the week delay has hurt me somehow. That since I was a week late getting the latest treatment, I have to wait for the drugs to build up in my system again; or worse, since I was just starting the treatment, delaying has caused my body to build up an immunity. I know these are complex medical terms I'm using here. If you wanted to understand you should've gone to Med School.
I'm wondering about every possibility. The IV Tech who gave me my infusion is new. Granted, he's been there for over a month now, because I met him while he was training, during my previous infusion 8 weeks ago.
But what if?
What if he forgot to actually inject the meds into the solution, and I got a saline infusion instead of Remicade? I had noticed, and even mentioned, that it felt different. The drugs are kept in a refrigerator and when they start to flow into my arm it usually feels pretty cold. It wasn't cold this time.
What if he gave me the wrong drugs? This isn't
too likely, because when I check in at the front office they give me a notecard with REMICADE written on it in big bold letters, and I hang that on the wall next to my chair when I sit down. He has to check it before he mixes up the meds, and I'm sure he notices it again when he takes the card down after hooking up the med bag. But it could happen. They do one other type of infusion there, hence the cards, but I don't recall what it is. And so I'm worried that I'll have some ill effects from getting a medicine that I didn't need.
So what if my feeling better last Tuesday afternoon was just a placebo effect? I knew I would feel better, so my body did. Or what if all my worrying has my body fooled and now I'm having false-negative placebo pain?
I guess I should call the office and explain how I'm feeling and my thoughts on what could have happened to get me here. But I feel like I don't know what to say.
