Autobio

You are currently browsing the archive for the Autobio category.

I love me some Tokyo Joe’s. I eat at TJ’s a lot and have for years. When I was waiting for my second transplant, I would often eat at the TJ’s by DU (now Snooze), oxygen and all. Before and since my second transplant, I usually go to the 13th & Grant TJ’s near my work. I typically order a medium chicken bowl with white rice, extra white rice, peanut or curry sauce on the side, and broccoli on the side. They know me at TJ’s so I can say, “The usual with curry sauce.”

Eating out for lunch is not smart. Wiser heads bring lunch from home. But then I would have to eat at my office either at my desk or in the cafeteria. I need to leave the building for an hour each day and lose myself in a book while I eat. So I overpay for a bowl of rice. I make better rice at home but it is not about the rice. It is about escape.

The standard serving of Tokyo Joe’s is like saying, “Would you like some rice with your sauce?” They skimp on the rice, which mystifies me. Asking for extra rice every time has caused some funny moments. I’ve become known as the guy who can never get enough rice. When rice seems to be lacking I ask for more and I get my little bonus bowl. But sometimes they will try to head me off at the pass by giving me a giant, overflowing bowl of rice. They are always very nice about it but it can be funny. I never know how much rice is going to appear and it sometimes feels like a challenge from the kitchen. “Can he eat that much rice?” Yes.

Like I said, they pile on the sauce so I have to ask for it on the side. Yes, I may be the pickiest diner at TJ’s — but it is so good and so simple. I started adding broccoli about five years ago. I needed to start eating some vegetables. I started out asking for it on the side because I didn’t like it and could drown it in a sea of soy sauce and eat it separately. I wonder if they think my broccoli on the side is some scheme to still get my maximum rice and chicken? I have moved from hate to neutral on broccoli but I still like that sea of soy sauce.

Tokyo’s Joe’s main competitor at 13th & Grant is Panera. Panera is the smooth-talking player of fast casual dining. They say all the right words…the food sounds so good. For example:

Chicken Tortellini Alfredo

Tender tortellini pasta filled with a blend of ricotta, Swiss and romano cheeses and tossed in our rich alfredo sauce then topped with smoked, pulled antibiotic-free chicken and asiago-parmesan cheese.

But it is not good. This delectable sounding blend is a little plastic packet that gets heated in the microwave.

Now I don’t claim Tokyo Joe’s is gourmet dining but I think it is under-appreciated relative to its flashier cousin. Simple is good. Don’t fall for the sweet-talker.

UPDATE/CONFESSION 8/28/14: Panera’s isn’t all bad. I often get lattes there.

I work three jobs. First, I have a full-time day job to pay the bills. Second, writing is my passion and I hope someday it will pay my bills. Being a writer with a day job is like having homework every day of my life but I usually don’t have the time or energy to do the homework. My third job is managing my own health care. Though I get lots of help from others, day-to-day I’m my own primary caregiver. I manage my medicines, appointments, treatments and so forth. It’s hard to find the time and energy to work these three jobs. Not to mention the daily errands and tasks we all have to do to maintain. I’m more chronically ill than usual now so working my three jobs and maintaining is that much harder. For example, a snowstorm swept through town a few weeks ago and dropped ten inches. I spent nearly all my energy for two days shoveling the walks.

Thus I have limited energy available each day and I hate to waste it dealing with incompetent people and incompetent systems. How much energy do we as a country waste on incompetent people and systems? A lot. Too much. As manager of my own health care, I’ve spent a good portion of my life dealing with incompetence in medical billing, whether with hospital billing departments or the billing departments of private companies. It’s been a stark contrast to the excellent doctors and nurses I’ve always had. It’s a rare joy when you find an oasis of competence in medical billing. Once upon a time I had a guy at my hospital billing department I could call and ask for a list of my outstanding bills and he would mail it to me. (Funny that his ability to fulfill this basic customer need is noteworthy.)

Let’s be clear. Medical billing is a nightmare for everyone involved. I miss my old pal at the University Hospital billing department but he must have realized he’d booked passage on the Titanic and jumped ship. It could be that no bright business school graduates want to get into medical billing and who could blame them? Because even when it’s competent it’s incomprehensible. So by competent I mean you get a bill that resembles something close to reasonable. It’s a low threshold you would never tolerate from any other business you deal with, except perhaps car repair shops. But you must tolerate it in medical billing and car repair or you’ll go mad. “You say the left wizonator gasket needs replacing? And there are hours of labor just to get to it in the middle of the engine? Um, okay.” Unless you want to enroll in automotive repair school or spend two weeks at the hospital auditing your account, you have to accept what you’re told. With your car repair guy there is hopefully some trust. With medical billing there is just resignation.

DO NOT BELIEVE ANYONE when they say private companies are more competent and more efficient than government. Some are (Amazon.com) and some aren’t (most others) but believe me, no government-run health care system could do worse when it comes to medical billing. When people mention a single payer health system, someone always invokes fear of mismanagement. Well, I can tell you from a lifetime of experience, there is plenty of incompetence on the business side with private health care insurers and providers.

Mail-Order Pharmacy Blues

One of the benefits of my job that pays the bills is that I have excellent health care coverage, for which I am very grateful. If you factor in my health care (and when you have a chronic illness you MUST factor in your health care), I’m making a GREAT salary. But dealing with my insurance company’s official pharmacy is a huge pain in the ass.

As a CF & lung transplant patient I take many medicines (each day, 46 pills/inhalers/injectables with 19 names). So I spend a lot of time managing my pill supply: filling pill containers, ordering refills, pursuing prescription renewals. For most of my meds, I order from my insurance company’s approved mail-order pharmacy. At first glance, there is a significant time & money advantage to ordering three month supplies from a mail-order pharmacy instead of getting monthly refills from my local King Soopers pharmacy. But given my mail-order pharmacy’s incompetence, I have to wonder.

Time needed to order medicine from my local King Soopers pharmacy: one 30 second automated phone call and 1-2 days wait for the medicine to be ready for pickup.

Time needed to order medicine from my mail-order pharmacy: one to three 10 minute phone calls and 1-2 weeks wait for medicine to arrive in mail.

My insurance company is United Healthcare (“UC”) and their official mail-order pharmacy is Prescription Solutions (“PS”). The latter should change their name to Prescription Solutions After Much Asshattery.

PS has a website where you can order your medicines. You add medicines to your “cart” and go through the usual drill. The website is slow, medicines appear and disappear, but overall it works — or at least places an order. However, certain medicines can only be purchased by calling the Prescription Solutions Specialty Pharmacy (“PSSP”). In my case, these are the heavy-hitter immuno-suppressant medicines Prograf and Rapamune. “Specialty Drugs” is the industry euphemism for “expensive.” And UC does not allow me to order three month supplies of this drug. I must order them on a monthly basis. To be fair, these are expensive drugs and the prescribed dosages can change so I understand why they’ve created this special class. For these drugs, I’m not allowed to go to my local King Soopers pharmacy. I must call the PSSP. This is inconvenient but I could live with it if it was as “fast and easy” as the PSSP claims. “Protracted and difficult” would be a more accurate motto.

As a funny aside, the specialty drugs ARE listed on the PS website. You CAN add them to your cart and submit an order for them. But you will never get them. And they will never call you to tell you you’re not getting them. Imagine if Amazon worked that way. You find a book you want to order on Amazon, add it to your cart, submit the order — and you never get the book or hear from them again. Then you call up Amazon and they say, “Oh, you can’t order that book online. You have to call a special number.” One person I spoke with at PS told me, “They are aware of the problem.”

What is it like to call the PSSP? First there is your time on hold. You hear a woman’s voice, “Thank you for holding, a pharmacy team member will be with you shortly.” Then the Mozart starts. Ah, wonderful, I bet you can hear the entire Mozart catalog if you’re stuck on hold for too long! Nope. You hear the same one minute of Eine Kleine Nachtmusik on a loop. And every thirty seconds the woman’s voice pops up again, “Thank you for holding, a pharmacy team member will be with you shortly.” When you’ve spent as much time on hold as I have, you get to map this all out.

Finally, someone picks up. They ask for your birth date (the hottest trend in health care is using people’s birth dates as identifiers), name, address, city, zip code and phone number. Then they ask why you’re calling.

Then they ask you three questions:

1. Do you ever forget to take your medicine?
2. Because of feeling better, have you ever stopped taking the medicine?
3. Because of feeling worse, have you ever stopped taking the medicine?

Aside from being patronizing, this is annoying. How about leaving the practice of medicine to my doctors? But hey, while you’re at it, why not rephrase the same question in another ten ways, dickheads? This is the procedure I have to go through EVERY MONTH to get medicine I have now been taking for 15 years. Imagine if the clerk at the grocery store quizzed you about your dairy consumption every time you arrived at checkout with a gallon of milk.

I can count on some sort of fiasco 80% of the time I order from either PS or PSSP. Usually, it’s because the order is “not going through” which means for whatever reason it didn’t process correctly and insurance was not applied. Remember, UC and PS are supposedly business partners yet the communication between them has a 50% failure rate. It always takes a series of phone calls to reach the end result, my monthly order of the same medicines at roughly the same price. (It’s a measure of the lunacy of medical billing that I don’t even care if the prices are consistent any more. If they’re close that’s all you can realistically hope for. It’s so exasperating you are willing to pay an Incompetence Tax.) They have an interesting standard operating procedure: if they cannot fill the order for you, they prefer to keep that information to themselves. THEY DO NOT TELL YOU WHEN YOUR ORDER IS ON HOLD! You have to keep checking to see if the order has been filled or if there is a hitch, which there usually is.

I’ll illustrate the above with one month’s PSSP fiasco.

Call #1: Woman. Mozart. Woman. Mozart. After a while, I get a person. Identifying gauntlet. Order medicine. Telephonic medical exam gauntlet. And I’m told the price for my order is around $700. “That is not correct,” I say. She’s going to send it to another department where computer circuits are massaged. I say, if the massage fails and the price doesn’t go back to the price I paid last month, call me.

They call me back, leave a message and ask me to call them.

Call #2: Ten minutes later, I call them back. Woman, Mozart, woman, Mozart, etc etc. After a while, I get a person. Before the identifying gauntlet, we have this conversation:

Me: “I’m calling you guys back.”
Her: “Did you already order for this month?”
Me: “Yes.”
Her: “Disregard the call.”
Me: “But someone just called me ten minutes ago and said to call back.”
Her: “You can disregard the call.”
Me: “I think you should check to make sure.”
Her: *sigh*

Then we go through the identifying gauntlet. Furious tapping of keys, airport check-in style. Then she says she’s going to put me on hold. I hear no Mozart. I hear dead air. After five minutes of purgatory, I give up and hang up. They don’t call me back.

Call #3: A day or two later I called back. Mozart. Identifying gauntlet. I speak to someone, who explains the high cost of my order this month (why it’s different than every other month). With the start of the new year, my deductible started up again. Never mind that this call is happening in March and I have ordered other medicines already in both calendar and fiscal year 2012. Also, I say, “I’m in state government. Our plan does not run on a calendar year.” Later I realize a third logical flaw with this explanation — through some kind of database magic, my deductible is (allegedly) being charged for the Prograf but not the Rapamune. “You need to talk to your insurance company,” I’m told. I hang up, ready to strangle somebody.

Then comes a whole new Circle of Incompetence. I go to the insurance company website. They have no phone number to call them about pharmacy orders (or anything), instead referring me to the Prescription Solutions website. I email Prescription Solutions. I explain the whole situation. The response email tells me to call the Prescription Solutions Specialty Pharmacy. Back where I started.

Call #4: I’m on hold for over ten minutes. Mozart, woman, Mozart, woman, etc etc. I’m ready to dance on Mozart’s grave. I get a person. I explain the situation. “Oh, no problem.” After a three minute conversation, they fix the problem (which it turns out was — I hope you’re sitting down — PSSP incompetence). They then mail me my prescription at the same price I pay every month.

All that to order two medicines I take every month. It’s Russian roulette with every call and every order but instead of one bullet in the six-shooter there are five. Normally you place an order and forget about it but with PS you can’t forget. It’s a task you cannot cross of your “to do” list. Until you see the order has shipped anything can happen. Will they ship it or won’t they? You assume when you order something it’s going to ship or you’ll hear from the company. Most businesses would go bankrupt if they were so unreliable. Is it because PS has a monopoly? They are my only mail-order pharmacy and my option for two critical drugs. Monopolies tend to have horrible customer service (think about your cable company).

Incompetent people and incompetent systems. Extra phone calls, extra time, extra energy to straighten out what should not have been bent. And it’s not just extra time and effort for me. It also becomes extra time and effort for my transplant nurse coordinators and others, who I have to call for help when my mail-order pharmacy fails me. That is the Incompetence Ripple Effect throughout the economy. And, finally, it’s more work for PSSP itself because I can only imagine these errors magnify into a thousand annoyed patients calling them over and over.

More experiences with PS & PSSP:

1. My doctors changed my Prograf usage. Prograf prevents my body from rejecting my donated lungs — very important. My transplant nurse called in my new prescription on 3/14/12. I was away from my office for three days and thought it would be waiting for me when I got back. I finally called on 3/20/12 and they told me the order was, of course, “on hold.” I realized this by checking the order status online. I called. It turns out it was on hold because my nurse had asked for a 90 day prescription and PSSP does not allow this. Did they call my nurse? No. Did they call me? No. The order would have been on hold forever, I guess. They told me they would send the order to their Data Entry Department to correct the prescription down to 30 days. And asked me to call back in two hours to place the order again. Do I need to call them every day to make sure nothing has tripped up my orders? I find this happens a lot on the business side of health care. Instead of the entity monitoring and fixing its own systems, they expect their customers to monitor and fix their systems.

2. On 6/5/12, I order a long list of medicine online. According to what I see online, everything seems fine. But I should have learned by now things with PS are rarely fine. On 6/11/12, I call and ask what happened to my order. Turns out it is…on hold. Why? Because they have one medicine listed twice in the order with my current dosage and older dosage. I don’t think this was my error but maybe it was. Again, why didn’t PS notify me my order was on hold? Instead of just placing the order on hold, why isn’t someone troubleshooting it? Great online ordering system! So I call up and speak to a guy named Gary. He is extremely competent and resolves the issue quickly. Total call time: six minutes. I wish I could speak to Gary every time I call. Maybe they need to change to a caseworker system, i.e., assign each patient to a representative. Or maybe they could put Gary onto a full-time troubleshooting detail that checks and fixes every order that is on hold. Maybe they don’t tell us our orders are on hold because they know they’re on hold for bullshit reasons and just need a second look? So the problem is they are slow with the second looks?

3. In their defense, hold time on calls has gone down drastically and they have discontinued the annoying monthly medical quiz.

4. February 2013. I order a medicine from PS I need by the end of the week. I order two day shipping. Two days later, it still has not shipped. The website says it takes 24-48 hours to process an order. I call and the representative (“Customer Service Advocate” they call them) tells me it really takes up to seven days to process an order. So I pay for two day shipping but that really means two days plus up to seven days? Awesome. I thought I had this particular fiasco worked out but then found out one of the medicines was not covered by insurance (according to PS — even though it has been covered for years). They told me to call UC. I did and UC said it was covered and that PS should have called them. In the end, covered. But because of PS incompetence I had to order it from King Soopers. If I could order 3-month supplies from King Soopers (why can’t I?), I would give up on PS.

(Note 12/5/13: had to disable comments on this post due to spam issues.)

Stanford Redux

I wrote the first draft of this a few weekends ago as I sat on the patio outside Tresidder Student Union, the Grand Central Station of Stanford’s campus. I had not been back to Stanford for 20 years. The campus has changed quite a bit but its most important aspects remain the same. It’s impossible to avoid reflection at one’s 20th college reunion. What leapt out immediately were the many physical changes to the campus. I think they’ve doubled the number of buildings since I graduated. Where there were once parking lots, there are new residence halls, including a complex of graduate student housing. (According to a grad student I talked to, they are luxurious.) And the number of science buildings seems to have tripled. One student I talked to told me, “It seems like a new building is opening every day.” There were new business school and econ buildings and a new performing arts center was under construction.

Reportedly, 1000 out of our 1500+ classmates showed up to our 20th. Many other classes were also celebrating their reunions. All Reunioners were issued name tags upon arrival. It was a big name tag with a thick red lanyard to hold it around our necks like we were kindergartners. I felt like an idiot with that thing on so at first I didn’t wear it everywhere. As I walked around campus without it, though, students looked at me like, “Who are you, Creepy Old Dude?” Or given our times, “I hope you’re not about to go on a shooting spree.” So I soon realized the name tag had a deeper purpose. It explained to the students who all these ancient wondering randoms were. So I started wearing it and the looks I got from students changed into something akin to pity. With the name tag around my neck, students looked at me like I was a relic or walking ghost. And I did feel like a ghost walking around campus. I thought, “This is not my campus anymore, it belongs to the living.” Which is to say, current students.

Stanford has an incredible campus. The buildings are beautiful. Even Wilbur and Stern Halls looked halfway decent! (I never thought I’d say that. More about them in a moment.) But what is most striking about the campus is the breathtaking potential energy of the place. They have been cranking out graduates for the past 20 years and every one was no doubt, like me at that time, brimming with confidence they would change the world, and some have. Stanford disgorges into the world an amazing mass of talent. Reunioners were ferried around on golf carts and the carts were driven by student volunteers. (For volunteering their time, some benefit accrued to the student club of their choice.) Talking to them, I could hear their potential energy, the majestic future that lay ahead of them — their personal plans that still operated in a frictionless void. Two were mechanical engineering students, one undergrad and one grad. The grad student talked about her work in biological engineering. (I asked her to work on growing lungs.) Another driver was a 1L at Stanford Law who had gone to Yale undergrad. He was about as humble as someone with those credentials can be. I know because I felt that confidence and potential energy myself once. Which just shows how powerful the Stanford vibe is, considering I had a fatal disease that barely made a dent in my vision of my future.

As great as the campus is, Stanford is at its core the sum of its people, and that sum is enormous. My Stanford friends — computer guys, doctors, lawyers, academics and so on — have had varying degrees of success and I am defining success as the heights reached in their chosen fields. Some have been phenomenally successful and others only slightly less so. Using my definition of success in one’s chosen field, I’m the least successful of the lot but I’m okay with that in the relative sense. I want my friends to succeed. It’s great to hear about their triumphs and adventures. What eats at me is that I want to succeed too, on a parallel track to theirs, as a writer. Bitterman, table for one? No, I’m not bitter. How could I be? Had I been born even five years earlier I would not have lived to see my 10th college reunion, let alone my 20th. For me, everything since 1998 has been “extra time” (to use a soccer term). Having said all this, I don’t think anyone gave a rat’s ass about other people’s success quotients at this reunion. People just wanted to see old friends and catch up. And it was great to see people, especially my old dormmates and frat brothers.

And it was fun to meet a few new people I didn’t know while in school. Back in 1987 during freshman orientation, the most memorable event for me was a dinner in the Quad, the academic heart of Stanford’s campus. It’s hard to compete with an evening in the Quad, surrounded by great architecture and the lit up mural on Memorial Church. So I felt compelled to sign up for the Quad dinner which kicked off the reunion. I wanted to relive that freshman orientation feeling. I had a few friends from sophomore year at my table but they were on the far side so I got to know a couple classmates I didn’t know when I sat down. (Which made it a lot like freshman orientation.) And as I spoke with my new friends at the Quad dinner, we realized that none of us knew all our classmates. So, new people to meet at 30th, 40th and 50th.

I like to ask myself two questions:

1. If I could go back to freshman year of college knowing everything I know now, what would I do?
and
2. What advice would I give today’s Stanford freshman?

I hope to answer these questions in a future essay. They’re fun questions to think about and being around campus helped me refine my responses.

Here are some other campus changes that jumped out at me while I was there (and may only be of interest to Stanford grads):

1. There is now a cafe between Meyer and Green libraries, a European-style cafe with a patio. There are many more cafes in buildings all over campus. Are today’s students eating more than we did? Or do they have more money to buy food? And Meyer’s exterior looks like it may have gotten a facelift.

2. I spent freshman and sophomore years in two crapholes known as Wilbur and Stern Halls. (Great people, crappy dorms.) They’ve had a makeover much like Meyer Library’s. Just a paint job and other cosmetic changes, I think, but they look nice. Did they fix up the interior too?

3. White Plaza is a big open space between Tresidder and the post office. They have added some trees and long & low stone barriers, perhaps to help guide traffic. It does not feel as open as I remember. (I have lousy memory so it’s entirely possible some of these things that struck me as new are not new at all. I’m sure in those cases someone will correct me.)

4. Was there a full-service post office in the post office? My bad memory is sending me mixed signals on this. There is a full-service US Post Office there now, and the post office boxes that surround the building are now enclosed. In my day, we just biked up to them, opened our boxes while sitting on our bike seats, and biked away. But I did notice my old mail box number is in roughly the same spot even though the old boxes have been replaced.

5. All the residences have higher security than we had. We could just walk in anywhere. Now all require a pass card (from what I could tell). This scuttled my plan to go back and check out my old dorm rooms, which was something I thought I wanted to do. I suppose I could have knocked on doors but I ended up realizing I didn’t want to see my old dorm rooms that badly.

6. I lived in Potter senior year. Peering in the front door, I was disturbed to find the interior styling reminded me of the new University of Colorado Hospital inpatient wards.

7. I did a lot of walking and driving around campus. One thing I noticed is all the totem poles and sculptures in random groves around campus, with a particularly big sculpture garden by Roble. Those weren’t there before, were they? They reminded me of Alaska. Very cool.

8. The biggest changes were to Tresidder. In my day, Tresidder had a convenience store, frozen yogurt shop, coffee house and a crappy cafe that seemed worse than dorm food. The convenience store, the FroYo, and the CoHo are still there and in the same spots. The CoHo — did we call it the CoHo? I don’t remember that abbreviation though such abbreviations were common — has a much better menu than before and is more cafe than coffee house. And now, in addition to the aforementioned, Tresidder has a Jamba Juice, Subway, Panda Express, AT&T store, fitness center, bike shop and “ye olde college drinking hole” sports cafe. The latter has a huge menu selection from chicken rice bowls to pizza and has wooden booths that remind me of standard college town dives that date from the 40s. This one does not date from the 40s however. It makes me wonder what all this space was used for in the old Tresidder.

During college, I spent many hours at Tresidder — studying, people-watching and eating crap from the convenience store. Over reunion weekend, I spent many hours there again — people-watching, eating better food and soaking in the potential energy.

« Older entries