Archive for March 2014

My high cost of asthma

In October of 2013, the New York Times ran an article titled The Soaring Cost of a Simple Breath.  I think I came across it on Google News, Facebook, and the links sent to me by many friends.  Yes, asthma does cost a lot.  It’s something I know all too well.  Reading the article left me wishing my asthma only cost that much.  I realize in a way I’m bragging by telling you how much I spend on healthcare, but I also want to point out what it’s like for those with severe asthma as opposed to mild or moderate forms of the disease.

The NYT article profiles the Levi family and their two daughters with allergic asthma who live in California.  In the video that plays a shot is taken of their medication spread out on a table.  They mention Pulmicort and Rhinicort Aqua; I also noticed Veramyst, nebulizer meds, and allergy medications.  I am very fortunate right now to have decent, employer-provided insurance; I work a full-time job and am able to afford my medications and treatments.  There was a time in the not so distance past where I did not have insurance through my job and I bought most of my medicine from an online pharmacy in Canada where $900 of Advair 500/50 only cost me $400 and change.  For a period of a couple years I had to make the choice of what to pay for – my medicine or rent, food, and whatever else seemed important.  At times I was not taking all my medication because I simply could not afford it.  When I disclosed this embarrassing knowledge to one of my physicians, they gave me some information on assistance programs in the state.  I looked into those programs and discovered I would have to have no insurance whatsoever for 6 months before I could apply to see if I was even eligible for assistance.  That is in no way acceptable or even thinkable.  That could have easily killed me.

I’ve also had to plead and argue with insurance over what I really need to keep me healthy.  Often times Tier 1 drugs don’t do the trick for me and after trying many alternatives my doctors agree I need to be on the Tier 2 or Tier 3 variants.  This has often resulted in my insurance trying to place me on generics or suggesting I try Albuterol, the most common drug prescribed for asthma as a just-in-time rescue medication, instead of Advair, Dulera or Xolair, maintenance medications that don’t even act in the same way as Albuterol or accomplish the same task.  When you make people’s well-being a business the important factor becomes a spreadsheet with credits and debits where the bottom line better be a large, black number and not a red one.  They tend to forget people are dying while waiting for treatment and medication.

So what do you do?  For starters I looked for discounts and coupons on all the major drugs I was taking.  Often times the manufacturers have assistance programs.  I quickly found coupons/discounts for Advair and Dexilant, and later Dulera.  Some of the medications I was taking were generics so that helped as well.  The biggest assistance I found for myself was purchasing my medications through Universal Drugstore and the worst of it was popping Benadryl as a way to save money on Allegra/Fexofenadine.  They say that stuff makes you drowsy, but I quickly built up a tolerance for it.

At the end of the NYT article, it stated:

Even with good insurance, the Hayeses expect to spend nearly $1,000 this year on their daughters’ asthma medicines; their insurer spent much more than that. The total would have been more than $4,000 if the insurer had paid retail prices in Oakland, but the final tally is not clear because the insurer contracts with Medco, a prescription benefits company that negotiates with drug makers for undisclosed discounts.

This is where I chuckled because I spend so much more than $1k a year just for myself, not two people.  At the moment I’m on:

  • Fexofenadine (Allegra)
  • Dexilant
  • Amlodipine
  • Dulera
  • Spiriva
  • Singulair
  • Prednisone
  • Allergy injections
  • Xolair injections
  • Pataday
  • Patanase
  • Maxair (discontinued, but I have a stash)
  • Albuterol

When I have asthma flares, bad allergies or actually become sick with something I’m on even more medication.  My insurance also uses Medco to negotiate prices for drugs and I use them to purchase three months worth of my maintenance medications at a time to save even more.  Last year I spent roughly $2300 on medication which cost my insurance company just over $20,000.  If I didn’t have insurance or Medco negotiating prices for me this would have cost much closer to $40,000+, mostly due to Xolair, which there is no way I could have afforded.  This doesn’t include doctor visits, labs and x-rays/imaging, ER visits and hospitalization, durable medical equipment, supplies, travel and lodging, dental, eyeware, and insurance premiums.  I also lost 20% of my projected income in 2013 due to unpaid medical leave on top of the 24 paid vacation and 10 paid sick days I earn every fiscal year.

In 2013 my healthcare combined with income lost due to illness cost me roughly $25,000.

This may sound like a lot or not so much depending on your economic status.  Combine this with rent, food, utilities, car loans, school loans, gas and car maintenance, internet access at home, cell phone, toiletries and other monthly supplies needed at home and I’m not left with much or any money left.  This doesn’t even take fun things into consideration like cable TV, a Netflix subscription, an occasional Mt Dew or birthday presents for my kids.  Fortunately my wife and I both work, but sometimes we wonder for what.  In the past seven years we could easily have banked $100,000 if most of our money wasn’t going towards my chronic disease.

Whenever I hear or see people saying there’s nothing wrong with health care in this country or are screaming about the Affordable Care Act ruining the economy, I have to assume one of two things:

1) they have no idea what it’s like to be really sick and/or

2) they’re either dumb enough to believe the lies certain politicians and “interest groups” are telling or they’re too rich and privileged to know what it’s like to pay for one’s health.

I’d try to describe this better, but I think the Daily Show did a good job of portraying this in their Third World Health Care – Knoxville, Tennessee Edition clip.

Prepping for NGCM 2014

April, also known as National Grilled Cheese Month, will soon be upon us.  In preparation for this celebration of ooey, gooey sandwiches grilled up in delicious fat, I decided to make a grilled cheese tonight.  I give you the tomato basil cheddar, mozzarella, bacon grilled cheese.

Grilled cheese sandwich

Pay no attention to the half-eaten appetizer grilled cheese

Ingredients:

  • Whole wheat bread
  • Unsalted butter
  • Cabot tomato basil cheddar
  • Mozzarella
  • Premium thick-cut bacon

Preparation:

cooking bacon

I first cooked a one-pound package of bacon in a large skillet.  After pouring out the bacon grease, I made sure to leave a coating within the pan to enhance the flavor of my bread.  My next step was to select the cheese from the secret stash in our fridge.

several types of cheese

Ok, so the stash isn’t super secret, but we do take cheese seriously in this house.  I buttered my bread, sliced up some cheese and built my sandwich in the skillet placing four bacon sliced in the layers of cheese.  I’ve talked before about knowing your bread and how it cooks.  Tonight I used new bread and slightly overcooked one side because I wasn’t familiar with it’s consistency.

The results were delicious.  The tomato basil cheddar and mozzarella merged well together.  The thin layer of bacon grease in the pan also added a noticeable and tasty flavor to the outside of my bread.  I would call this sandwich ground breaking or super special, but it really hit the spot after a long day at work.

 

Healthy Lung Expo

Hey Indiana residents!

The American Lung Association is hosting a Healthy Lung Expo April 15th, 2014 at the Indianapolis Marriot North.  I’d love to go, but I have no earned time left to take a day off work.  They’ve extended the early bird registration rates, are offering scholarships to assist with hotel, travel and registration, and will even let you register for just Asthma Education Track or Professional Track without paying for the whole Expo.  Click here for more info or to register.

I think it’s really cool they are focusing on asthma as well as the traditional COPD and smoking cessation.  If anyone goes I’d love to hear how it is as I’m interested in maybe going next year if I can swing taking time off work.

Walter and Me

I’m re-watching the last bit of Breaking Bad and remembering some of the similarities between Walter White and myself

  • Bald
  • Facial hair
  • Glasses
  • Health problems
  • Two kids
  • Married to a strong, independent woman
  • Drive a similar car
  • Made money washing cars back in the day
  • Have a degree in science
  • Work in education
  • Have lived in the desert
  • Briefly lived in NE
  • Have had to come up with creative ways to pay medical bills
  • Like to cook
  • Cough a lot
  • Sometimes cough up blood
  • Threw pizza onto a roof once
  • Known by many by a pseudonym
  • I like eating bacon on my birthday

Allergy Season 2014 has started

I have horrendous seasonal allergies.  They affect me all year long, but the worst of it is Spring through Fall.  Today I feel like it has officially started.  My sinuses and part of my chest burn when I breathe in the air outside.  My eyes are swelled up, and my face hurts.  This will by my life until late November or early December.  Most of the time I get used to it and forget I even feel this way, but I’m just now feeling it again after a several month hiatus so it’s noticeable.  Julius Ceasar was told to beware the Ides of March and so do I.  Along with the start of tree pollinating, I often cough up blood around mid-March.  This hasn’t happened since I started Xolair, so here’s hoping the hemoptysis stays away again.

Also saw my out-of-state lung doc again.  For now I’m going to keep doing what I’m doing and try really hard to not increase my prednisone.  Based on my history of PFTs and other symptoms, we’re looking at VCD as a possible undiagnosed condition.  With asthma you generally have trouble getting air out, not in.  At times I experienced one or the other, or both.  Unless PFTs in the next six months show specific results or other things happen, I’ll do another methacholine challenge next visit with a laryngoscopy to see what happens.  If that comes back positive I might be able to get off some of the asthma medications in order to treat the real problem.  The other day on FB I saw my buddy Art post something about Western medicine focusing on symptoms, not root causes.  The more I think about this, the more it rings true.  The other concerning fact is I’ve been seeing lung specialists for 20 years and this is the first time anyone has tried to even look into this.  I’ve heard of people being misdiagnosed with asthma and heavily medicated for years for the wrong condition.  It makes you wonder how many others are taking drugs to treat symptoms that don’t match their diagnosed condition.

Walking

Walking sure doesn’t seem like a big thing until you can’t do it.  It’s also a low-stakes cardio activity many asthmatics like myself can do as an alternative to climbing mountains (aka stairs) and running marathons (aka jogging).  My friend Stephen is a champion walker and he’s one of the most severe asthmatics I know.  I considered myself a moderately serious weight lifter from the mid 90s through 2012 when I had to quit due to another bout of hemoptysis.  Since then my activity level has slowly dropped and dropped, but I can still exercise with dumbbells at home and I can always walk.

I know none of these ideas are earth-shattering, but here are some ways I’ve found to walk more throughout my day.

  • Park farther away
  • Use the bathroom at the other end of the building at work
  • Go up and down every aisle at the grocery store whether or not I need something in that aisle
  • Take extra trips when carrying stuff in from the car
  • Find reasons to go from one end of the house to the other

Asthma creates this vicious cycle on our health.  Besides making it hard to breathe, I have to take fistfuls of medication every day with annoying side effects which include water retention and weight gain.  I’d love to always be active, but sometimes this will seriously flare up my asthma causing me to take even more of that medication with the side effects.  Once I have been inactive for a while I’ve not only lost muscle tone but I’ve also packed on some water weight and my metabolism is all screwed up.  My one friend in all of this is walking.  If I’m having a good day I can walk farther and more quickly, and on bad days I can shorten distance and intensity.

Generation Kill

HBO's Generation Kill

This past week I watched all seven episodes of HBO’s Generation Kill. In ways it reminded me of Band of Brothers and Tour of Duty. If you haven’t seen it, Generation Kill follows the 1st Recon Marines as they make their way to Baghdad, and along for the ride is a reporter from Rolling Stone which has similarities with Barry Pepper’s character in We Were Soldiers.

There were a few things that stuck out to me based on the genre and what I’ve heard after the fact seeing this is based on actual events.

  • those in charge were apparently idiots
  • there was a vast gap between the regular Marines and the reservists (remember the National Guard units in First Blood?)
  • some soldiers seemed normal while others seemed unhinged or a little crazy
  • the officers were kind of split between good and bad

While I wish there were more than just seven episodes, the show did end well before jumping the shark. It was also really moving at the end when the company watched the edited video put together by one of their own who had been shooting footage on a handheld camera. It summed up what had happened during their time pretty well and foreshadowed what was to come.

So is their a recipe for war movies/shows in this vein? I really started to notice some similarities where most of the officers seem to be slightly incompetent and the NCOs are the experts. There’s also one, maybe two, officers who are really good and respected by the enlisted men. Is this an HBO thing?

I must say it was great to see the Master Sgt offer to rile the men up with more grooming violations if morale became low.  At first I wasn’t quite sure how to take his antagonistic approach to the men because he seemed like a nice guy at heart.

Generation Kill - mustache violation

Orlando, Florida’s Caribe Royale

In both 2013 and 2014 I stayed at the Caribe Royale in Orlando, Florida while attending work-related conferences and have resolved to never stay there again.  To paraphrase a friend who works at a different hotel in the area,

Caribe Royale is a smoker’s paradise

The great state of Florida apparently doesn’t have one of those handy laws requiring people to smoke x feet away from building entrances.  The Caribe Royale has a large main building containing the front desk, restaurants and other facilities with residential towers behind that surround a large, common pool area.  Further behind are more towers containing suites and their conference facilities.

  • Next to every entrance/exit are trash cans with cigarette receptacles
  • These same trash cans exist inside as well as outside
  • Hotel guests seem to think they can smoke inside buildings and place their tobacco products in the same receptacles
  • Allowing people to smoke next to entrances means the smoke is sucked inside to lobbies every time a door opens
  • This also results in the elevators smelling like smoke
  • My floor in the hotel smelled like smoke

I’m ok with designated smoking areas, but the Caribe Royale effectively allows people to smoke everywhere.  There is no NO SMOKING area for me to safely retreat.  Of course this doesn’t seem so bad unless you’re someone like me whose life can depend on avoiding this airway irritant.  One night the smoke was so bad it ended up taking me out for the evening and I missed half a day of my conference.  This year I went to Florida feeling great and ended up wheezing with rales for five days.  if I wasn’t already prednisone-dependent with the ability to adjust my own dosage as needed, I probably would have needed to seek emergency care.  I complained last year and again this year.  They are “sorry,” but sorry doesn’t help me breathe.  I won’t ever be staying at the Caribe Royale again, nor attending this conference unless they change venues.

Dollar Shave Club update

Hey bearded, or not-so-bearded, friends!  Last summer I came across the Dollar Shave Club, loved it and started spreading the word to all my friends.  In some previous posts I talking about the razor service and my experience the first few weeks using the new razors.  It’s been about 7 months since then and I thought I should let you know how that’s been going.

  • Still loving new razors appearing in my mail box
  • I dropped back to the every 2 month delivery vs the monthly delivery
  • One tube of shave butter lasted me almost 6 months
  • Dollar Shave Club is currently partnering with the Colon Cancer Alliance to help bring awareness to colorectal cancer

I’m not sure why I love getting stuff in the mail and it probably explains why I love Amazon.com so much.  I often find myself awake and remembering the need to purchase things after 10pm which is also when most businesses are closed.  Being able to hop online, place an order and it appears in a few days is awesome.

While the Dollar Shave Club encourages you to grab a new blade each week for optimal use, I really don’t like shaving.  In fact, I recently had a 4″ beard due to not shaving which covered almost all the beard growing surface on my face.  I currently have two packs of razors waiting to be opened which is four months worth of razors, but I’m ok with stocking up.  I also shave my head and occasionally I’ll have a blade that’s just not working and I’ll need to immediately swap it for a new one.

The Shave Butter continues to be one of the best or the best shaving gel/cream I’ve ever used.  I’m not sure how I could go back to shaving cream and not be able to see exactly what I’m doing.  The translucent nature of the shave butter really helps shaping your beard into exactly what you want it to be.  I think at the moment you have to buy razors to be able to buy the Shave Butter.  If you could just buy it by itself, that could open up another whole market.  Similar to if HBO would just sell me their services instead of me having to buy cable TV service through Comcast in order to add on HBO.

Lastly, The Dollar Shave Club is trying to raise awareness about colorectal cancer.  If you didn’t know, it’s colorectal cancer awareness month.  This is one of the most preventable types of cancer people can get so awareness can literally mean the difference between life and death for folks.