CF/Transplant

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These days, girls with Cystic Fibrosis call themselves cysters and boys with the disease are known as fibros. This cracks me up but it’s awesome. I grew up in a mostly solitary fight against Cystic Fibrosis but these days with the internet and social media there is a great and easily accessible community of CFers out there. If I was growing up today I’d likely join in. I’ll save the whys of my solitary route for another time but today I want to discuss two dramatic portrayals of CFers, one a cyster and one a fibro.

Spunky Cyster with Low Lungage

I recently watched the first season of Bates Motel on Netflix streaming. I’m not into horror movies and had little interest in Psycho or this prequel that imagines Norman Bates as a high schooler — but I am interested in one of the characters: Emma.

Emma is 17 years old, has Cystic Fibrosis, and walks around with an oxygen hose in her nose and a portable oxygen tank on wheels pulled behind her. She is said to be waiting for a lung transplant. Reading up on the series it sounds like they added CF as a character quirk and do not plan on getting too involved with it. Or do they? Maybe Norman falls for Emma, she dies, and that is the final straw in his growing insanity. She is being set up as the girl we want him to end up with. And she seems to be his last morsel of moral compass. (Mama Bates is nearly as psycho as Norman.) So if he loses Emma — both the love of his life and his moral compass? Trouble at the Bates Motel.

The portrayal of a CFer is wildly inaccurate at times. I was afraid she was going to roll through the entire season without coughing but finally in episode three, on a hike, she breathes heavily and coughs. Later in the season she has a more realistic cough session. However, you can’t have a character coughing all the time on a TV show. I understand that so I’ll give them a pass. But throw in a cough here and there people.

A CFer on oxygen and on the transplant list would not be able to run around town and school as effortlessly as Emma does. Needing to use oxygen during the day indicates her lung capacity (let’s call it lungage) has dropped to about one third or below. Usually being on the transplant list means one’s lungage is even lower than that. And low lungage means one’s body cannot get enough oxygen to the body for it to function. It is not just a matter of being exhausted, like someone at the end of a 10K race. Runners still have high oxygen saturations at the end of races.

So it is hard to imagine her taking the aforementioned hike, which must have been several miles into the forest to a hidden pot field. To make it more ridiculous, at the end of the hike Emma sprints away from the bad guys with her oxygen tank in hand. I’m at 27% lungage and I’m on oxygen and it takes minutes to recover from climbing one flight of stairs. There is a time delay though. I could run up those stairs. I could sprint. But three seconds into it my body would go into catastrophic failure. It’s more than being out of breath. The body urges collapse. The lungs strain for oxygen. The mind rejects all sensory input and shouts, “THE END IS NIGH!” I imagine it’s a lot like drowning.

Olivia Cooke, the actress who plays Emma, was asked if she researched CF for the role. She said, “I watched a lot of documentaries.” And she said CF is, “called the disease of the beautiful people. From the outside, you wouldn’t think there was anything wrong with them.” And of CFers, “You think there’s nothing wrong with them, apart from when they go home, they have to take lots of medications and do lots of exercises.” She adds, “I never wanted to play too much on her disease” because “she’s such an intelligent, spunky character that I would never want to play too much on the CF and take anything away from her.”

In short, I’m a beautiful person! But I think you can usually tell something is physically wrong with a CFer. Mainly because of the coughing. It is a deep nasty cough and usually phlegm comes up (and is hopefully spit out). Or, often the CFer is underweight due to bad digestion. This is probably less true today with improved CF therapies. Meaning young CFers are looking healthier than ever.

But I’m not complaining too much about Emma. I’m glad there is a CF character (and a very likable one). And I appreciate Olivia Cooke’s idea that she doesn’t want CF to dominate the character. That was at the core of my solitary approach to having CF as a kid. But less sprinting and a few more coughs. And get her a better portable oxygen set-up. Hauling those wheeled oxygen carts around is a pain in the ass.

Fibro Tired of Hot Babes Hitting on Him

I also recently watched a movie called Foreverland, written and directed by Canadian fibro Max McGuire. It’s a solid road trip movie about a fibro and his friend’s cute sister. The friend was a fibro and has died. Their mission is to deliver the deceased fibro’s ashes to a sacred spring across the country. The fibro lead looked really familiar and this was bugging me until I realized he was the actor who plays Norman’s brother in Bates Motel, Max Thieriot.

Max does a good job of playing a CFer with some good deep coughing. He should give Olivia Cooke some tips. But my favorite scene is when he gives a presentation to some medical students and a hot woman med student hits on him. He rebuffs her like it’s a big hassle to have babes constantly hitting on him. This has not been my experience with CF! It made me wonder if this has been a genuine problem for the writer-director or if this is some wishful writing. I knew things were getting better for CFers — but this much better???

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!

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