Tuesday, April 20, 2010

Drugs


This is Susannah's current daily drug regimen, which is at the lowest ebb it's been at since we left the hospital. The stuff in the spoon is Mepron (Atovaquone), which tastes so bad that the protocol is to hold your nose while swallowing it. It also stains everything it touches bright yellow. On many surfaces, this stain can't be removed. Basically, it's paint. Above it there are eyedrops, though Susannah's eye has made a splendid recovery from what the ophthalmologists are now willing to tell us was the largest corneal abrasion they had ever seen.

The purple dinosaur above the Mepron is also named Mepron, or Mep. This was an Easter present from Jean: bopped on the head, Mep emits a sort of agonized howl, and then lays an egg, or perhaps a coprolith, in the waiting basket. Susannah has taken to ritually smacking this dinosaur whenever she objects to her medications. Christoper has added to the routine with the “dancing flower” on the right. The flower has a microphone which picks up sounds, and dances a sort of twist in time to the ambient noise level. So when Mepron howls, the flower goes wild. These are among the lesser-known advantages of modern technology in the ancient field of pharmacology.

The eight syringes are Heparin on the left, and saline solution on the right. Susannah still has one of the two Hickman catheters leading into her heart, which is an extremely handy way to get drugs in or blood in or out. (In the case of ECP, it gets run in both directions, moving blood out and then back in.) I would estimate that these catheters have spared her about 300 pokes with a needle so far. But they can potentially clot, and so have to be flushed with saline and anticoagulant meds every twelve hours.

The pills in between are a grab bag of steroids, antibiotics, anti-fungals, anti-virals, immuno-supressants, and vitamins. Please note the valganciclovir and mycophenolate in the lower left: the pills are almost identical in shape, size, and color.

This brings me to my thought for the day. We keep being told that we are smart people, and we have good memories, and good vision at close range. And yet we find it a constant challenge to manage these medications, even now: things were much more complex a month ago. For instance, Susannah got prescribed _______ for a sinus infection, which the insurance company rejected and replaced with ciprofloxacin. Cipro has absorption issues in the presence of magnesium and calcium. In big bold letters, we were warned that she should not to take Cipro within two hours of taking magnesium, or take magnesium within six hours of taking Cipro. But she was supposed to take both Cipro and magnesium twice daily.

Now, that's certainly a solvable problem: she could take the magnesium at 8 AM, Cipro at 11 AM, magnesium at 6 PM, and Cipro at 9 PM. But it's surprisingly close to “one train leaves from Boston, heading to Chicago at 50 MPH...” And this is only one of many possible constraints: some of the drugs need to be taken with food, others without food. Some of the drugs produce side effects countered by other drugs. Some of the drugs are sensitive to humidity, or have toxic interiors which tend to leak onto surrounding pills. And so on and so forth.

Even water gets in on the act. Susannah can't drink our tap water, and for a long time after chemo she couldn't stand the taste of purified water like Aquafina. So she would take her pills with fruit juice, which is sugary: and some of these drugs raise blood sugar levels, tending towards diabetes. The nurses recommended she use energy drinks instead, but those contain vitamins that prevent the absorption of certain drugs. And so on and so forth.

Meanwhile, our house looks kind of like a pharmacy. Here's the overall materia medica of 21 Woodbridge Street, including stuff that Susannah takes on an as-needed basis, or stuff that she is currently not taking. I've left out things like gloves and masks and alcohol wipes, of course:




Now, most people do not go around getting bone marrow transplants. But most Americans, especially older Americans, do generate some version of this pile. And it is hardly any surprise that this is a significant source of problems. Misuse of medications is blamed for a large chunk of ER visits, 40% of nursing home admissions, and upwards of $150 billion annually in additional doctor's visits, hospitalizations, and the like. For people over age 65, three medications—warfarin, insulin, and digoxin—account for 33% of all ER visits. And this in a population that has lots of other reasons to stop by the ER.

Beyond some point, this is an irreducible problem: as we get older, most of us become more reliant on a range of medications, and we are more and more apt to make errors in taking them. But it seems premature to just throw our hands up in the air and say “well, no one will ever finish taking their antibiotics and ABR bacterias will kill us all, too bad about that.”

It seems like there are a number of obvious steps that would help with this. On the one hand, drug manufacturers need to hire some art students. Or some junkies. I remember in Baltimore, you used to be able to buy crack in little baggies that had cute logos on them: smiley faces, Nike swooshes, whatever. And LSD is routinely sold in tabs on printed sheets with all sorts of colorful design. So whose bright idea was it to make 75% of all legal drugs in the form of unmarked round white pills? It's all fun and games until you dump a pillbox and you can't tell which ones are calcium and which ones are steroids.

And then, someone needs to knock together the app that takes your prescriptions, compares their interaction effects and other exigencies, and provides you with a rational schedule. And then, when you realize in the middle of the afternoon that you forgot to take the shiny blue pill that morning, the app tells you to take it, or not to worry about it, or to call 911, or whatever. This would not be a complicated program, though its manufacturer would have to have some complicated liability insurance. Which is probably why it doesn't exist.

Notably, doctors can't fulfill this role very well, because they have no way of knowing if they are the only ones prescribing drugs to a given patient. Moreover, substitution policies by insurance companies mean that the drugs patients are actually taking are not necessarily the ones they were prescribed, and may have different side effects and interactions.

Patient case managers seem to provide a major line of safegaurds in this respect, even on an ad hoc basis. These are often social workers or nurses. Many of them do not have medical degrees, and—more to the point—it often seems like their oversight is not well integrated into the patient's overall plan of care. It is striking to me that nearly all of the practical information we've received about taking medications has come through informal channels: nurses, other patients, or our own research. Perhaps that's just an efficient distribution of labor, but I doubt it is what most patients are expecting.

Finally...one of the most time-consuming elements of clinic visits and intra-hospital travel is repeating long lists of medications from memory. Susannah can do this while half-asleep and/or semi-delirious, but it's hard to imagine that she's normal in that regard. There are paper printouts of med lists, but they're frequently incorrect, and it seems dubious to rely on the patients to correct them—or even to bring in the right sheet. Having this sort of information on a USB drive or the like seems like a good idea.

It is, I'm aware, very easy for outsiders to wander into an elaborately engineered world like a hospital and have inane suggestions for improvements. I get the impression that medical professionals have been biting their tongues a lot throughout the long popular debate on health care reform. But still, fresh eyes aren't a bad thing, and it is useful to bear in mind that not all means of improving our nation's health care system are partisan: many may simply be technical fixes on the other of color-coding pills.

In the meantime, Susannah has a howling dinosaur and a dancing sunflower in sunglasses.


5 comments:

  1. Thanks for the update.
    The pills reminded me of my father. He had a tray full of different pills by his bed. I, in my infinite wisdom, constantly pushed him for some lifestyle changes: some exercise, less food, ... But he in his infinite wisdom knew he should be listening to me.
    You are in my thoughts.
    Love, Mohammad

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  2. thank goodness for the howling dinosaur and dancing sunflower...some sanity that may create some real joy, rather than the boggling meds confusion you have described. I love that you're wacking it regularly Susannah...I am sure they are both powerful healers.
    Also it does seem like a good idea to colour the pills at least...this could be a whole new profession...some computer nerd could set up a programme to calculate a timetable for the meds and supplements. Although I guess it might have to always be personalised given the amazing array that it is possible to be prescribed.
    However I just hope it is all working as effectively as needs be and that Susannah you are making good headway with the healing.
    Sending love and healing energy your way. GJ

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  3. Thanks for the update. I am reminded each time that I read your posts, of the saying "Life is stranger than fiction!" And indeed it is...


    Have you considered a Brita filter -- it removes over 90% of the minerals and chlorine from tap water. Or, are those not the problem? Even if you filter bottled water, I'll bet it would taste better.

    Neil

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  4. Ethan -- in case I haven't before, let me complement you on this blog, which has been an invaluable source of comfort for all of us who care about you two, but also a brilliantly written series of essays on illness in modern life.

    It's rather crass and partisan of me to do this in this context, but I wanted to offer a small ray of hope that we DID fix some of these problems, a bit, in the health care reform. There's a huge movement to electronic patient records which will hopefully, at least, make it easier for information such as medicine lists to be shared between your different doctors so everyone's operating on the same page.

    The government is willing to help pay for this transition because it saves them money in the long run with reduced medical errors and hospitalizations.

    So maybe... someday ... you won't need the flower.

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  5. Wow, what a challenge! A system in clear need of some improvement, but like you said, a frightening field to enter due to the liability!

    I think electronic patient files will help, but it sounds like what is primarily needed is for the Dr to have to schedule the dose's. If he had to make an entry into your "Meds" Google calender, he/she would see all the other meds you were taking and have to think about the interactions.

    Oh, and there is a way a prescribing Dr can prevent substitutions for a prescription. I can't remember the exact wording, but if they write "Fill as written" at the end, I think no substitutions can be made. I heard it from an NPR talk show but I can't remember which.

    Best of luck with the "Pharmacopoeia" (did you know that this word is in the spellchecker!) and we are all wishing for your rapid healing.

    Duncan

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