Tag Archives: blood counts

Let’s Talk Sky-High Medical Costs (and one thing that doesn’t suck about the Cheesecake Factory)

The New York Times recently had a great piece about how any given medical procedure in the U.S. almost always costs more–often many times more–than the same darn thing in other rich countries. This is probably the biggest reason why U.S. medical spending per person is maybe twice that of other rich countries, with worse health outcomes. I’ve been following this ever since I wrote an article about it, Sky High and Rising, for Sojourners magazine, where I work (normally, I mean–I’m out sick now).

The NYT article is great and you should read it right now (though Dean Baker points out, as he is wont to do, that it ignores the huge effects of medical patents). And I like that the article has space at the bottom for people to add their own responses to several related questions.

But I think most people were way, way off when they responded to the question of how it would affect them if doctors provided upfront price lists for procedures. I am all for transparency, but just having price information without other information could be worse than useless:

-For one thing, it could lead people to decide between doctors or between hospitals based on price without knowing how good the doctor is. You might either wind up choosing the cheapest, or using price as a proxy for quality and choosing a more expensive one, but you’re not making an informed choice.

-To get information about how good a doctor is, you can’t just go with patient satisfaction (which is based more on bedside manner) or even with how many patients get well–you’d have to factor in how sick that doctor’s patients were beforehand. (This is the kind of thing that the new Accountable Care Organizations, which pay for medical results rather than piled-on procedures, are taking a hard look at).

-On top of knowing how good various doctors were, you’d have to know how important a given procedure is, if you didn’t trust your doctor–presumably one goal of knowing the price is for you to decide whether the procedure is worth it for you at all.

-While it is a great idea for there to be some system-wide effort to see whether medical procedures are effective, it is a terrible idea for even well-informed consumers to take calculated risks. I’m a prime example. In 2005, I had a mild cough that wouldn’t go away, and I felt run down. As a healthy, nonsmoking person in my mid-30s who exercised regularly–and who was living on a nonprofit salary–if I’d had no health insurance, I might have deferred going to the doctor much longer than I did. Indeed, it two two or three doctor visits before they took a chest x-ray and determined that I did not have the expected walking pneumonia, but rather an apple-sized tumor next to my lungs. If it had taken me longer to go to the doctor, who knows whether they’d have been able to cure me? Thank God I did have health insurance with a reasonable copay (thanks also to Sojourners and Kaiser Permanente).

-I can personally verify that, if you get a serious illness, you are going to get way more information than you can handle. I am a smart person. I have an Ivy League doctoral degree. But when I get told I have cancer, it’s really hard for me to take in all the information the doctor is telling me about it, even when the doctor is excellent at communicating (and when I haven’t just started to flat-out cry).

So what do I think we should do, if not give everyone way more information than they can handle and then let them suffer the results? I think that the medical system should do the hard work and build up the expertise to develop standards of care, and follow them. I was inspired by this article in The New Yorker about how medicine should have the level of quality control that characterizes the Cheesecake Factory. The comparison is pretty ironic, as the Cheesecake Factory’s stomach-turningly insane portion sizes (a single entree, without drink or dessert, can have more than your whole day’s worth of calories and five times your day’s recommended saturated fat) are just the sort of thing that fuels the U.S. obesity epidemic. But hey, irony is everywhere.

I’m Normal! (ish)…

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Whoo hoo! As of yesterday, day 46 after my mini haplo transplant, all my blood counts are normal except for the red blood cells (which are apparently the last thing to come back). Here are my white counts (the red line is ‘phils, which they didn’t always give me a number for):

(The big spike a few days ago was when I got a minor sore throat). There is often a blood count dip around day 60, so I will look out for that in a couple weeks. But for now, I am psyched–even my liver enzymes are down into the normal range! I am still not allowed to go outside without a mask in the city, or floss, or be in crowds, or eat at buffets, but I am totally psyched to be making progress.

I’d just like to say that all this is way more encouraging than back right after the transplant, when the key to my daily blood-numbers printout literally told me to “panic.”

For example, here are some images from my printout way back on day 7 after transplant, in mid-April.

Actual standard language at the bottom of each blood counts printout I've got.

Actual standard language at the bottom of each labs printout.

As they’d just intentionally suppressed my old immune system to make way for the new one, near-zero white counts were normal. It was obviously cause for caution, but I really doubt panic would have helped. They should definitely reword that…

Your Results May Vary

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One thing I think it’s real important to keep in mind is that there’s a whole lot of random in daily test results sometimes. Today, I feel like a hematological rock star, because one of the nurses told me yesterday, “You’re a rock star for getting a high enough white count to be given tomorrow off of coming in” to the outpatient unit. But that’s definitely not the whole story of the past couple weeks.

Although my counts have been going up like crazy for the past three or four days, before that there were three or four days when my main clinician (whom I’ll call Nurse Practitioner Brusque Yet Friendly) seemed clearly disappointed that my white counts were stuck in the 700s.

And before that, there was the exciting first day when the nurse told me there were signs of marrow activity (a white count of .25), and my assignment was to be .40 the next day, but instead I dropped to .19.

Jesus helped me keep these reversals mostly in perspective (at least, to the extent of not brooding on them when I was supposed to be falling asleep), but it’s always a temptation to dwell on things.

Anyway, for today, yay! My white counts and ‘phils are technically in the normal range. But they’ll probably fluctuate some more (starting now that they’ve discontinued the ‘phil-boosting shots and put me on a routine antibiotic that will suppress my counts a little). And that’s ok.

My small bit to fight individual obsessiveness/national medical costs

Although, as I’ve mentioned here and to anyone who’s asked me how I’m doing for the last five months (and a lot of people who haven’t), I’m pretty obsessed with my blood counts. So I am a bit proud of myself that today–when Dr. Virginia did not order counts for a routine checkup (because I had counts last week and will have more next week), but then said he could do counts if I really wanted to–I said no. It wouldn’t change my treatment any, and Dr. Virginia had just said he was fairly sure the Vidaza was working at least somewhat, so the mature thing was to not get more holes poked in my arms and more of society’s medical resources used up.

Of course, it’s a drop in the bucket compared to the necessary medical costs I’m incurring, but necessary things are what medical resources are there for.

It’s also a drop in the bucket compared to my general obsession with my blood counts, as witness my spending way too much time this evening making a scatter chart of them. These give my counts across the 28-day cycle as a percentage of day 1 of the cycle. For cycle 3 I had to extrapolate what day 1 was, as I only had days 5, 9, and 22.

cycle 3 = blue diamonds; cycle 4=red squares; cycle 5=green triangles. There was an extra month between cycles 3 and 4 (hence the stat for day 35).

See, the platelets have a nadir around day 16 or so, while the white counts have a nadir around day 28 (i.e., the time the next cycle starts, except in cycle 3, which had an extra week tacked onto it for Christmas). Cycle 4 (the red squares) is an outlier because that extra week let my counts come out of the Vidaza-side-effect slump. I’ve got my chart all set up to insert the data for cycle 6 and see where that goes…

Bit of a Dip

Well, I’d hoped that the fact that the Vidaza is kicking in (having its intended effect of decreasing malignant cells in my bone marrow) would overcome the fact that my blood counts normally dip in the middle of the month (because the side effect of Vidaza is to decrease blood counts). No dice–the dip, it is there:

You can see the recent dip at right, and its three predecessor dips stretched out to the left.

Phil (the purple line) and I were still on good enough terms that I could eat some lettuce yesterday, but I should probably err on the side of caution and have a salad-free weekend.

My 28-day Vidaza nadir–it’s the new Mr. Monthly.

Whoo Hoo!

Hey, blood count fans–great news! When I got tested today at Dr. Virginia’s, I found out my white blood count has tripled in the last week, and my neutrophil level gone up sevenfold. (Warm welcome back, Phil!)

Lookit those white counts climb–go, prayer team, go! Normal WBC is 3.5-10, and normal GRAN (neutrophils) are 1.2-8.

I’m no medical expert, but since Dr. Virginia told me that “hemotologic improvement” would be the sign the Vidaza was working, I’m going to go ahead and assume that means it is working to get me ready for transplant (by reducing the malignant cells in my bone marrow, preparatory to the donor bone marrow wiping out the stragglers with an immune response). Dr. Virginia said the Vidaza often took 3 to 6 months to kick in, and I am in the middle of cycle 4, so that’s right on time.

As an extra benefit, the white counts put my immune system back into the normal range, at least for now. Things tend to dip a little during the middle of my Vidaza cycle, but I’m going to take the opportunity to eat salad for the next few days, and to forego wearing a face mask during non-crowded times on the Metro.I’d like to thank God, all you folks praying for me, medical science, and all the great nurses at Dr. Virginia’s. Also, I’d like to thank my DNA–you are taking the Vidaza treatment to demethylate your little double-helixed heart out, and I really appreciate it.

I heard from the nurse transplant coordinator at Hopkins that they won’t do a bone marrow biopsy on me this month and that they’re likely to do two more months of Vidaza before transplant–I’ll find out more treatment timeline info when I have an appointment there at the end of the month.

Me *not* wearing a mask on my way home from Dr. Virginia’s today. Don’t worry, I’m still avoiding coughers.

cherish each moment, even the ones that suck.

thoughts about surviving cancer. also, other things.