CF/Transplant

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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.)

I’ve been in the middle of a health episode since just before Labor Day and unfortunately the various treatments I’ve been doing haven’t worked. My lung capacity is still down over 10%. So I’m doing another Solumedrol blast this weekend. Hopefully the second time is the charm. I’m calling King Arthur and his knights back out of the castle for another gallop!

Wide awake and jacked up on steroids at 4am, I may as well riff on religion, right? Some friends and I were talking about religion yesterday and one said all religions are crazy fictions, with Mormonism being among the craziest. Here’s what I think:

1. In just the visible universe, what we can see from Earth, we know there are billions of stars in our own galaxy and billions of galaxies. We estimate the entire universe is at least 250 times bigger than the visible universe, or maybe infinite. We are small. We are ignorant. We barely have a grip on what the universe is all about.

2. Here on Earth, we barely have a grip on how our own brains work.

3. When someone dies, something that was there is no longer there. Call that something the soul, life energy, whatever. Where does that go? Does it go somewhere or does it just dissipate into the ether? Nobody knows.

4. In short, we know next to nothing. If you have a religion that helps you deal with these unknowns more power to you. I’m not going to get worked up about your belief system. It would be nice if you didn’t try to ram it down my throat, however, and most people don’t. The ones who do are loud. That’s why fundamentalists and rabid atheists annoy me equally. (Also, I don’t like many of the political stances taken by religious organizations, but I’m not getting into that here.)

5. People are going to find their own belief systems. This cannot be stopped. So why stress over what people believe? (As long as they don’t harm the rest of us with it.)

6. Even people in organized religions rarely believe every tenet of the religion. If you talk to people about what they actually believe, there are as many belief systems as there are people. I think most Westerners and maybe most non-Westerners too, whether they know it or not, live within an eclectic belief system comprised of many tenets of many religions.

7. When it comes to the Universe, death, God and so forth I suspect we are ALL WRONG. The Truth is unknowable for us at the present time. So how can I hold it against someone for coming up with a fiction that works for them? We all live within our own fictions, religious and non-religious.

8. Don’t bother worrying about what is Truth. Believe what you want to believe.

9. I’m about to epublish a novella called “The Forever Library” in which I talk about what I want to believe about life and death. Stay tuned!

I’ve been going through a lung transplant rejection/infection episode over the last few days. My docs started treating me with a massive three-day Solumedrol (steroid) blast. The first side effect of Solumedrol is that is leaves a dull taste in your mouth at all times and a special dullness that engulfs every morsel when you eat. The second side effect is insomnia. My first night on it, Wednesday, I did not sleep a wink. It was the first time in a long time I literally got no sleep. Even on sleepless nights you usually get a half hour or so. And there is no productivity possible because it’s exhaustion combined with relentless restlessness.

As I laid supine trying & failing to sleep I came up with a personal Google challenge. Could I find a photo on the internets that would symbolize the Solumedrol coursing through my veins toward the dastardly rejection in my lungs? I did much better than a photo…

It’s not often that I quote the Bible but one of my favorite lines comes from Psalm 121:

I lift my eyes up to the hills;
From where does my help come?

Help comes from significant others, family, friends and — for me, in those bleak wee hours — King Arthur leading the Knights of the Round Table on one last ride:

I love that film and I love this scene, one of the film’s great movie moments, which incidentally re-popularized Orff’s Carmina Burana. I encourage any and all to use this video to inspire you in any struggle. Help is on the way. Sure, they may take a short detour through a cherry blossom festival, but they’re coming.

Thursday I had a bronch and my second Solumedrol dose but that night I slept much better. Almost normal. I was still awake enough, however, to compile a list of my top ten favorite podcasts:

1. The Adam Carolla Show. Love me some Aceman. He’s more conservative than I am on some things but his focus is on common sense. He’s the unofficial spokesman of a political movement he may never have heard of: commongood.org — which began with Philip K. Howard’s book The Death of Common Sense: How Law is Suffocating America.

2. Men in Blazers. Funny English guys talking about the English Premier League with occasional allusions to the Battle of Trafalgar, Germany’s WW2 bombing of Rotterdam and more.

3. Fantasy Football Scoutcast. More funny English guys talk about the EPL from a fantasy angle.

4. Mohr Stories. Jay Mohr is funny but can be oddly ass-kissy with his guests. I thought he was going to ask Eric Roberts to marry him.

5. B.S. Report with Bill Simmons. A podcast Founding Father (Adams?).

6. This American Life. I found TAL when I was waiting for my retransplant in 2006-2007. I think they revitalized radio and inspired the podcast genre more than anyone else. The George Washington of podcast Founding Fathers.

7. Smodcast. Ben Franklin for sure.

8. The Tobolowsky Files. You know him. He played Ned Ryerson in Groundhog Day. Funny stories about his life with an emphasis on his theater and film experiences.

9. NPR’s Planet Money. My only connection to financial news. Lots of good international stories too.

10. The Moth. In the tradition of TAL, people telling their stories.

Honorable Mentions: WNYC’s Radiolab, Real Time with Bill Maher, Kevin Pollack’s Chat Show and Writing Excuses.

Friday I went in for my last steroid blast and to install a catheter for my antibiotics treatment. Yeah, “install” feels like the right verb. I used to get PICC lines in my arms. (Normal IVs last 2-5 days. PICC lines last 2-5 weeks or more.) As I understand it, there are four routes through the arms for a PICC line. In one arduous and epic fail of a PICC line-inserting session, I discovered that three of those routes no longer work for me. And we gave up before trying the fourth. Instead they put in a midline (a shorter PICC line). But midlines can’t be used for some antibiotics so I had to move up to the next level catheter, a Hohn catheter right in the jugular. This is my second time on the Hohn program (as an outpatient). If only having a Hohn catheter in your jugular was as exciting as their marketing material implies:

PowerHohn

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