The Denver Chronicles
For those of you following my health, Perils of Pauline (probably too dated a cultural reference for most)-style (and for a refresher, or to catch up, see the other Denver Chronicles items), I had a long talk with my N.Y. pulmonologist, Claudia Plottel, today, after her talk with my Denver doctors. The upshot is: they have failed to find anything. About eight weeks after my last bronchoscopy, no MAC culture has grown, and no signs of sarcoidosis, either.
So why was I told after my November bronchoscopy that I had MAC? They now believe it was transitory, or the result of a compromised sample — maybe MAC somewhere else in the lab where my tissues were marinating migrated to my slides. Very reassuring. In any event, since (aside from an intermittently sore shoulder that bothers me at night sometimes, nothing to do with my lungs) I feel quite fine, we are going to call it quits on the medical investigations for a while. To my N.Y. and Denver doctors, I am an interesting a puzzling case. CT scans show I have some kind of lung disease, but they haven’t been able to pin down what. So I’m going back for a check-in pulmonary function test and probably CT scan in October — like you would go to have your teeth cleaned and cavities checked by a dental hygienist once or twice a year (which reminds me I need to do THAT, too).
An anticlimactic, but not bad, ending (for a while anyway), to my saga.
No final results of bronchoscopy from National Jewish , though when I checked back in I was told “nothing is growing yet” (for those of you who haven’t been following this saga, it’s all there on The Denver Chronicles, at right), but the bill has arrived:
I reproduce it here in the interests of full disclosure. $12,000-plus and I was an outpatient and didn’t even leave with a diagnosis, much less treatment! I am not faulting National Jewish, which is a splendid place, but it is a strange phenomenon, to be so well-covered by health insurance (unlike a majority of Americans who are not well-covered, or the 40 million who have no coverage at all, these costs were pre-approved by Cigna, our carrier) that you have no real concern with a price tag like this. I can’t think of any other consumer purchase, if you want to look at it that way, where the consumer has no interest in questioning costs or keeping them down, or even has any idea what goes into them.
My pulmonary function test, I now see, cost over $900. I remember that — it consisted of breathing into a machine that recorded my levels for about twenty minutes. What made it so expensive? Amortizing the undoubtedly astronomical costs of the machine? It can’t be the energy used, or the time of the tester. And what happens when the machine is fully paid for? Does the cost go down? Why did it cost many tens of thousands of dollars, when my father was comatose for weeks after his second aneurysm some years ago, to keep him on a respirator? Why does that cost more to operate than, say, a large air conditioning unit? Similarly, my cardiology testing was over $1,000, though it was a ten-minute test where they stuck sensors in ten or twelve places on my body. I see that my pyschology services — 50 minutes with a very nice C.S.W. — cost $400. I don’t think the top Freudian shrink in Manhattan bills that much for a not-quite-hour.
Clearly being in the hospital made me a much more productive person, since in the week or more I have been back I’ve hardly blogged a word, and I am falling behind in work and other things. But I wouldn’t want my silence here on medical and other matters to alarm anyone.
The word from National Jewish about my last bronchoscopy is, per an e-mail response to my inquiry today:
“It is way too early for the mycobacterial specimens, nothing yet to report. Maybe in about a week…. The routine bacterial and fungal specimens are negative.”
Translation of this, according to my local doctor, is that it means sarcoid has been ruled
out again. If they confirm the MAC I was said to have in November, then I guess they’ll be ready to start the antibiotic thing. If not, I’m quitting this medical business! In any event, I am off to London and Oxford for a few days.
I am about recovered from my latest bronchosopy, on my way home, and back to work, soon. It was better than the November one in that I haven’t been so wiped out in recovery. Apparently that was because they used less sedation. (In the November one, I think I lost consciousness just as the probe was going in, and remembered nothing.) On the other hand, being mostly conscious while they are shoving things down your nose and snipping nine or ten bits of tissue over the course of an hour or so is not the most fun I’ve ever had. But it is over, and much as I’ve enjoyed, and tried to get the most out of, my stay in Denver, I am looking forward to being home and getting back in my normal life. I should have some results from the latest biopsies in a week or so.
My last morning in Denver was memorable, as it coincided with the annual Cherry Street (or, I guess, block of Cherry Street between 22nd and 23rd) Easter Egg Hunt and Brunch. I got to be in the annual picture (though, stupidly, I forgot to give my camera to someone to record it). But I did get a shot of the other photographers taking a picture of the egg-hunters, after they concluded their search of the street’s front lawns on that beautiful sunny morning:
A few days ago, when they were putting the chairs up on the tables in the cybercafe where I was relating the history of my strange malady, I had just gotten a diagnosis on the day after Christmas. (A bizarre coincidence is that it’s the day, three years apart, that my father had BOTH of his aneurysms some years back.)
I was told in this phone call that a late test — a lavage, or tissue wash that take some time to grow cultures — revealed that I had MAC, a mycobacterial illness other than TB. The bronchoscopy guy referred me back to my regular pulmonologist, and we decided together that I should come here to National Jewish, since they see so much of this stuff they are the gold standard, and why not get the best? It took some months to schedule a stay here, and that brings us up to date. I figured they would finalize my diagnosis and start treatment and send me home.
Hasn’t worked out that way, for reasons I have chronicled earlier. Where we are now is that we lost some time because the original biopsy slides are missing in transit, or lost by NYU — VERY annoying — and it took a while to get an appointment for me with the busy Occupational Medicine division here, which handles sarcoidosis, which has leapt back into the lead as my probable diagnosis, after being eliminated in an earlier round.
Let’s take a moment to understand why that is. Going into my November bronchoscopy, sarcoidosis looked like the most probable culprit, and indeed I was kind of hoping to have it, since it is relatively benign and may go away on its own or never need to be treated if it doesn’t affect my organs. When the initial biopsy results were in, the guy who did it (I keep not mentioning his name because I am somewhat critical of both his manner and his findings, and I don’t need a lawsuit on top of the grief I will be getting from the RLS community from the post below:) said sarcoidosis had been ruled out because even with a small sample, if it wasn’t present in that it was almost certainly not there, given the distribution pattern of sarcoidosis (as opposed to, say, cancer). I found that disappointing, but when, a month later, I was said to have MAC, I didn’t think about it much more.
Now the MAC can’t be recreated. May have been transitory. So why has sarcoidosis re-emerged? Everyone looking at my CAT scans here says the pattern is consistent with sarcoidosis, and it turns out the bronchoscopy guy really didn’t know enough to have ruled it out — the folks who see this all the time, like those here at National Jewish, say you need to do 8-12 biopsies (that is, take that number of little tissue samples when the pincers are moving about my lungs), not the ONE OR TWO the original NYU guy did. Naturally, I was annoyed that he made a definitive pronouncement without doing enough work to justify it, but the National Jewish people are fairly kind about his work, taking the attitude that a simple country NYU physician couldn’t be expected to know as much as the folks here in Denver. Or kind of. (This is the point at which I should say that every single doctor, nurse, specialist and aide here has been a pleasure to deal with. It’s not their fault I am going to leave here soon knowing no more than I came here with.)
All that brings us around to today’s bronchoscopy. This time, they’ll be very thorough. More biopsies, more saline injection to get a better wash, and bunch of other things I don’t quite understand. In a few hours, I’ll go into some kind of prep (I think they call it triage, but that makes me think of soldiers lying around in an army field hospital with limbs hanging off), get my nasal passages and throat numbed, have i.v.s hooked up, then get some kind of valium cocktail (“conscious sedation”) that will help me to feel it is perfectly delightful to have a long probe with a pincer on the end slide through my nose into my lungs.
So I will go dark for a while, since my last experience with this made me sleepy and feverish for a day or so. But I should be home in a few days, and in a few weeks I ought to know what I need to know about I really have and what treatment, if any, I might need.
So long for now.
Because you have to spend some of your time (at least judging from the notices up in the halls and elevators here at National Jewish) attending lectures on subjects like:
“Mechanisms of Sensitization to FAS-mediated Apoptosis”
“Understanding the Role of BCR Signaling in Tumorogenesis”
“GTPases and the Confirmation of Cell Polarity”
Then there are flyers asking people to volunteer for studies of strange illnesses I have never heard of, like Restless Leg Syndrome. Perhaps I have that, too. I don’t like to sit down for very long.
(I know I am going to regret this post, for it will probably turn out that RLS is an awful disease, with millions of dedicated suffererers who troll the web daily in search of solidarity and relief, and when their Google search brings them here, they will crash the Typepad server with their outraged comments. I may hear from the Apoptosis community, too.)
For some reason Denver seems to have a lot more well-preserved kitsch, like the sign on The Mayan Theater, where I saw Thank You for Smoking last week:
and on my walk today, the Bluebird:
and the Satire Lounge:
and the Royal Host Motel:
Had some time for a walk in the 80 degree weather that Denver is enjoying, and made it inside the State Capitol building, indulging one of my odd enthusiasms. (I’ve visited about half of the capitol buildings, and collect antique postcards of them.) In back of the building is a strange statue of an Indian, I don’t know — whipping? tying up? — a buffalo:
and in front is a Civil War Monument with a plaque added in recent years apologizing for some Indian massacre earlier Coloradans tried to pass off as a civil war battle:
Also in front, from the capitol steps, nice view of the Rockies beyond City Hall:
Inside, the House and the Senate were actually meeting — a real treat, and the buzz of the lobbies and galleries got my pulse racing for the old days when I prowled the halls of the Texas Capitol looking for legislators and aides to buttonhole. I sat watching the Colorado House for a while, and oddly, though they seemed to have an electronic voting board like most legislatures these days, they stood up to vote yea and nay.
There was remarkably little security in the Capitol with the legislature in session — I never saw a guard, and no one checked my heavy packback (bulging with laptop, camera, books, art supplies) during my self-guided tour of four floors.
I love the ornate details of virtually all state capitols:
This one has a reddish marble throughout:
And of course the inevitable dome:
A special treat for a world-class geek like me was the hall of Presidential portraits. Here is Benjamin Harrison:
Took myself to lunch later at the famous Brown Palace. Despite warnings from my friend Jack Rosenthal, no meeting of the Red Hat Society taking place in the central atrium — a beautiful place, with tea sandwiches served and a tuxedoed pianist serenading the patrons, more special now that its more famous cousin at the Plaza Hotel is no more — but worth a trip to one of the increasingly rare local institutions of elegance and taste, most downtown hotels these days run by chains and very much like the last one you stayed in in another city. And don’t get me started on the loss of the classic department stores, like The Outlet and G. Fox in the New England capitols of my youth.
I am going a little stir-crazy here as they try to nail down what is wrong with me. Somehow the slides of my New York biopsy have disappeared in transit, and until they can find them or re-biopsy, something I don’t contemplate with joy, but will have to do if it’s the only way to find out whether this MAC is transitory (good news) or lodged in my inflamed lungs (what we thought was the case, and why I expected to be in treatment by now), I am medically idle until my consultation with the occupational health division (which deals with sarcoidosis, which has re-emerged as a possible diagnosis) tomorrow.
So I read (was probably the last person on the Upper West Side of Manhattan to complete Dava Sobel’s Longitude; took up Howard Gardner’s Changing Minds since I have never yet managed to convert another person to my opinion on anything; and just finished Philip Roth’s The Plot Against America, the restoration of FDR to office after the Lindbergh pro-Nazi interregnum chronicled in the novel quite satisfying on a day when the papers tell us Cheney was roundly jeered when he threw out the first ball at the Washington Nationals’ opener). I sleep (about nine hours each night, then the occasional nap — catching up, I guess, for many years of six-hour nights). I blog (here is the evidence). And I write — two articles so far, and one speech, with another speech and article to come. Secretly I also work, and have managed a few site visits in the late afternoons. Yesterday to the Colorado White House Project (I’m a board member of the national group) where I attended a terrific training for women (and a few men who were interested) who are running for, or considering a run for, their first public office at the local or state level; and today to the Bell Center, a progressive public policy outfit that has been a critical leader in the backlash against the so-called “Taxpayer Bill of Rights,” a Grover Norquist concoction designed to cripple government, of which Colorado was an early adopter.
And I have time to ponder the mysteries of health and wellness. I have been blessedly healthy all my life. As a child and adult, I have never had an operation, never broken a bone, never had braces or prescription eyeglasses, never taken an over-the-counter remedy other than aspirin and its variants, and then quite rarely. Never been in the hospital other than three days in the spring of 1973 when the Columbia Health Service quarantined me for measles. Never had anything more invasive done to me than the routine colonoscopy I had after my 50th birthday, and, late last year, the bronchoscopy done to try to get some tissue to find out what is going on with my lungs. Haven’t used more than a few sick days in my ten years at OSI.
Good health is partly due to good genes, good luck, good attitude and good habits, and I am happy to take some credit for the last two, but the reverse is not true — some people are in ill health despite their good attitude and sterling character. I learned from my father’s late-life illness (enduring Job-like travails of aneurysms, stroke, paraplegia, after 67 years about which he could have written exactly what I did in the paragraph above) that luck can change suddenly, and that no one should be smug or self-satisfied about their good health. Illness is not weakness. (For a great evening of theater dealing with these issues, New Yorkers should see Lisa Kron’s Well, now playing at the Longacre Theatre.)
The strange thing about my current illness is that for the vast majority of time I have been dealing with it, I’ve felt terrific. I have a few little creaks here and there, but in general, nearing fifty-two, I feel as good or better than I felt at twenty-two. I only discovered something was wrong with me through a kind of fluke. I had a viral infection, a flu-like thing, in January of last year, and it put me in bed for three or four days with aches and fever and congestion and violent coughing. A few mornings I noticed a tiny bit of blood from my cough, so I told my doctor, Ken Jaffe, (since retired to organic beef farming upstate) and he suggested a chest x-ray.
I hadn’t had one for probably 25 years, since I taught nursery school. So I went — on Martin Luther King Day, I think — and they found some spots on my lungs. The doctor suggested a CAT scan, and referred me to Claudia Plottel, an NYU pulmonologist whose been my chief doctor for the past year of trying to figure this out. By this time the viral infection was gone and I was feeling myself, but the CAT scan showed nodules in my lungs that shouldn’t be there, and I was off on a diagnostic adventure which over the course of the year ruled out just about everything I might have, leaving sarcoidosis, an immune disorder that for some reason is most prevalent in African-Americans and Scandinavians (neither of which, DNA tests pending, I appear to be) as the most likely diagnosis.
But since I had no actual symptoms of sarcoidosis — eye irritation, skin rash, arthritic tendencies — my doctor and I decided on a strategy of doing nothing unless the picture changed. I would come back every three months or so for a followup CAT scan. (I believe the way doctors and hospitals write it is CT scan, but they always pronounce it “cat,” so I like the homier spelling.)
And so it went for most of last year. But by the late fall, several CAT scans had shown, according to the NYU radiologists who looked at them, some progression, or advancement of the condition. More nodules. We all then decided this information tipped in favor of a less passive strategy — a biopsy to take some tissue and see what was going on there.
The lungs aren’t easy to get to, unfortunately, so they had to go in through a bronchoscopy, which I’ve described in earlier posts. I had that in late November. I was a bit scared at the time, both because it would likely give me more definitive information about my situation (which in my wildest private imaginings, could be something more awful than I had been told was possible) and because it might hurt. I am good at pain that I can know and anticipate, that is limited in duration — very good at the dentist’s — but not so good at unknown pain of unknown duration.
The bronchoscopy wasn’t that big a deal, but the anesthetic knocked me out for a few days of delicious sleeping, punctuated by coffee Haagen-Dazs and chicken soup. Another pulmonologist had done the bronchoscopy, the kind of guy who specializes in them, does hundreds a year, maybe. His bedside manner was not, shall we say, as appealing as the communicative and funny Dr. Plottel, but your surgeon doesn’t need to be Dale Carnegie, he or she just has to get your tissue out without collapsing your lung.
He said he’d give me the results on, say, the following Monday, so I called at the appointed time. Receptionist said he was caught up with other patients. Called several times over the next few days before I finally got him. This was an unsettling time, and it really made me think about how I and my colleagues do our jobs in philanthropy. People want answers and decisions from us, and sometimes, when we don’t have the answer yet, we don’t tell them anything. We may even let their e-mails and message slips pile up. And they think or fear the worst. Getting a grant or not getting one is not a life-or-death thing, but it is very important to the people waiting to hear, and my experience as a patient made me vow to be much better at responding to grantseekers in my work. (That was some months ago, and I have failed at this a number of times, but I aspire to do better.)
Anyway, when I finally got the results they were inconclusive. He was pretty clear there was no sarcoidosis — which, strangely, I had been hoping to have, since it seemed relatively benign and I didn’t have nothing, so I might as well have that — but no evidence of anything else. That was anti-climactic, and slightly unsettling. So Dr. Plottel and I started to consider what I might do next. For some people, the remote possibility that they might have something very bad, which hadn’t been found yet, would be all they need to know to go to the next level — which, in my case, would be a surgical biopsy, in the hospital, cutting my chest open, etc. I don’t think I’m that kind of person. I was willing to keep a watching brief. But I learned, in grappling with this calculus, that the course you choose is not always dictated by medicine, science, the facts. It has more to do with the kind of person you are, and what level of risk you are comfortable with.
Then an interesting thing happened. Dr. Plottel, in a serious burst of additional due diligence, showed my CAT scans to two more radiologists, including some big higher-ups at NYU. The second two, while not directly contradicting the first two, said that they understood why the others had seen progression, but that they wouldn’t make that finding based on their own examination of the film.
That was interesting. Of four radiologists looking at the same data, two thought one thing and two thought the other. And I had undergone a moderately invasive procedure based on the news that the nodules were progressing. I realized then that my humanities/political science guy view of science and medicine was touchingly naive — there’s an art to all this, putting it most charitably, that is more like looking at a painting or interpreting a novel or a dream. I could not avoid, non-science guy that I am, taking an active role in my own treatment.
Then, on the day after Christmas, while I was in Rhode Island with my family, I got a call from the bronchosopy guy — a late precinct reporting, as it were. Finally, a clear diagnosis.
But that’s all for today. The internet cafe is closing and they are putting the chairs up on the tables.
I am not making a wry dig at the liveliness of this fine Western city. That was the actual name of a 1995 movie with Andy Garcia and Christopher Lloyd. But seriously, one thing to do here when you’re dead is allow your plasticined body to be displayed in Body World 2, an exhibition packing them in at the Denver Museum of Nature and Science, which I visited when the hospital sprung me early today. (I could get home quicker if they scheduled me more densely, but that’s another story.)
Over the weekend, at the various social gatherings arranged for me in Boulder and Denver by my friend Linda Shoemaker and by Dorothy, I always asked people what I should be sure to see as a temporary visitor here. First everyone mentions the Tattered Cover Bookstore, one of the leading independent booksellers in the U.S., and a beacon of literate civilization here. I did that on Friday. What we now take for granted at Barnes and Noble and Borders — comfortable nooks and armchairs to read in for hours with no one bothering you, a coffee bar where you can take a stack of magazines you have no intention of buying — were pioneered, I believe, by Tattered Cover. I’m glad I made it there this trip, because they lost their lease and have to move this summer.
The other thing everyone mentions is the Nature and Science Museum, which would not be my usual haunt, but after hearing this so many times I figured: when in Denver… So I went to the Body World exhibit ($20!) after checking out a few diaramas. (I forgot, since it has been so long since my kids were little, what fun diaramas are, even in the age of IMAX nature films — woolly mammoths and mountain goats and martens up close.)
Everyone has been urging me to see the body exhibit in New York, too, so I’ve now checked that off my list. I’m glad I went, but even though the people whose cadavers are splayed about gave their permission for the greater good of science, there is something creepy about the realness of it. Since my lungs are on my mind a good deal these days, it was interesting to see real ones in various stages of health and disease, and also what an aortal aneurysm, which befell my father, looks like. Seeing human fleshed in various cuts is very much like…well, it’s very much like going to Citarella when you’re serving flank steak for dinner. I may be inching closer to vegetarianism.
A word about Boulder, where we hung out for an hour or two Saturday afternoon before Linda’s fine dinner party. I was only there once before, about twenty years ago, but like many alt-culture places in the U.S., it has lost a bit of its funkiness. Even the homeless people seem prosperous. Denver (and Boulder), like almost any American city, have distinctive things that you can’t find anywhere else, particularly the spectacular natural setting. But the tony Cherry Creek section has — like its counterparts in DC, San Francisco, New York, L.A., Boston and so on — a Crate and Barrel, a Banana Republic, a Restoration Hardware, etc. And as you get to the outer edges of the city, in office park and strip mall land, there’s Home Depot, and Lowe’s, and Chili’s, and Chipotle Mexican Grill and the like. It’s becoming possible to live anywhere in the country and have precisely the same dining and shopping habits. Occasionally there will be a mountain in the background.View Original