Getting Use to Being Disabled…

By Christopher Green

Back in 2004, when I was still just getting use to being on disability, I came down with what turned out to be a life changing case of pneumonia. I went into Fairview Hospital on May 30th, 2004 via the emergency room. Since I do not remember exactly what happened to me for the next two weeks, Laurie, my wife, tells me that within a few hours of my admission, she was called back to inform her that I was going to being intubated .  (That is when they poke a hole in your neck and slip a tube down into your lungs to assist in breathing.)

I was in such a state that the medical team working on me decided to induce a coma via drugs. A potent combination of Morphine and Adivan did the trick. I remember them tugging hard on my neck, no pain just pressure, and being taken up to the ICU and that was it for me for about two weeks.  

What happened to me over that whole month I was in hospital back in 2004 is such a pivotal moment in my life that I want to go into that episode in much more detail down the road.

For now, I need to mention that my pneumonia quickly developed into a nasty case of ARDS (Acute Respiratory Distress Syndrome.) The doctor in charge, the same lung doctor I mentioned before who told me all that was wrong with me was a bad case of Asthma, told my wife, in what she described as a snide manner, that I had only about a 40% of survival.

Obviously, I beat those odds. Curiously, surviving the ARDS is one of the underlying reasons I am so on edge about the lung transplant. How many times will I be able to be so lucky?

Ever since that bad case of pneumonia landed me in the hospital, I have been tethered to an external source of Oxygen. Whether a tank that I wheeled around behind me or a small tank I could sling over a shoulder or my oxygen concentrator at home, I have been attached to the good old air tube for all but 15 or 20 minutes at a time. (I like to take showers without the tube. I’m so daring that way.)

This technology has served me well. The Oxygen Concentrators they have now are simple, durable machines that are capable of pumping out O2 rich air. According to WikiAnswers.com, the process is a simple two-step trip through a filter system that is filled with zeolite crystals. This filter acts as a “molecular sieve”, so to speak, and removes almost all of the nitrogen from the room air. Since Nitrogen makes up, according to kidgeo.com, 78.08% of the atmosphere, filtering out just half of the Nitrogen boosts the O2 level in the air coming from a concentrator to around 55%. A concentrator working at capacity will kick out 98% O2.

I firmly believe that how I live my life today would not be possible even 25 years ago.

The beauty of this machine is its simplicity. It is really just a pump with a series of filters. It is durable as well. I’ve been using them now for almost 6 years and have never had a problem. Supposedly, the filters can last for upwards of 20,000 hours, which is about 10 years of normal use.

The only thing I had to worry about when I was getting use to the whole idea of external O2 was how the cats would react to all this tubing running around the house. Curiously, the moving tube never really caught their attention. But about a month ago, the big Tom named Floyd started to snag the tube as it jostled and jumped behind me. I squirted him a couple time with the spray gun and that was that.

The Set-up I have allows me to fill small, portable tanks with this attachment that sits on top of the Concentrator.  Funny, I just thought about it. I use to name all my machines, my cars and what not.

Anyway, compared to when I first came home from the hospital with my brand new O2 support system. Back then, I had to lug these three-foot tanks around with me and then schlep them back to the depot and get another six or seven tanks just to get to be able to get out of the house. Now I have three two-hour tanks that I can fill-up at home and get out of the house for six or so hours without having to worry about running out.

The good news about all of this is I have great health Insurance that covers almost the whole cost of my Oxygen needs. That bad news is that the health insurance pays nearly all my Oxygen needs.

I know you are probably shaking your head about now and thinking maybe he should crank that machine up a liter or two, but if you give me a minute, you will probably be as confounded as I am.

First of all, you may have caught in earlier posts that I was involved with party politics and have run for office a few times myself. I will not use this blog as a forum for my political views. If you are interested in that part of my life, click on this link and you will get an idea of where I stand.

                                                http://journals.democraticunderground.com/WCGreen

Now, I really need to bring up a problem that exists in that “sweet spot” where politics and health care meet. The kind of stuff I am about to discuss is usually not a consideration for most people unless it comes down to the intrusion of a personal health care crisis.

We all know that costs are going crazy when it comes to dealing with the Health Care Industry in this country. On that we can agree. But when it comes to the very lucrative personal medical device, my concentrator is one, the only mention in the just passed HCR bill about medical devices was the levying of a 2.3% excise tax on any device sold. This is suppose to generate $ 20 billion over the next ten years to help pay for the overall reform. The political trade off here was that the increase in the market for these devises due to an expanded pool of patients more than makes up for the 2.3% tax levied at the point of sale.

But this levy does nothing to address the huge cost that the rental of medical devices has on the country. Notice I said rental. When I first needed the O2, my first concern was how much was this going to cost. They told me that with my combination of private health insurance and Medicare, the out of pocket expense for the machine would be about a couple of hundred dollars a year.

Great. I can handle that. In fact, it has turned out far less than that. I believe I have paid out of pocket only about $ 500 over the last 6 years. Again, that is not a burden to me. However, I still looked at my insurance and health insurance bills and discovered that between the two providers, Medicare and my for profit health insurance, they have kicked in about $ 2,000 a year to rent a machine that costs between $ 750 to $1,100. And since this machine can be refurbished by changing the zeolite crystal filters, the machine can keep going on and on and on.

The contracts with the insurance companies and Medicare limit patients to having somewhere in the vicinity of 36 months of rental fees for each machine and then the ownership would pass to the patient. What the service companies do to keep the income stream flowing for each patient is to change out the machine every 24 months or so that the process starts all over again. They refurbish the machine they replaced and then send that out to another customer for 24 more months of rental fees.

I thought about this. The good part of this scenario is that if something breaks down, I can get a replacement within a day or two. I have a 50-hour tank sitting in my living room in case the machine goes down or the power goes out.

Now there is a whole industry out there depending on this model of renting out relatively inexpensive medical machines and other devices. For instance, my MIL is in a nursing home and they charge about $200 a month for a special bed that retails for about $2,000.

In some cases, there are three of four profit centers between the patient and the device.

My question is why can’t we just buy the machine and then pay a small service fee each month?

It seems to me that that would be cheaper and more efficient. They did try to do this a while back but huge medical equipment manufactures and medical device distributors convinced a whole mess of senators, including one of my senators, George Voinovich that people did not want to own this equipment.

BTW, this includes those Scooter Store power chairs that are advertised all over the cable.

Now I do not know everything about how this stuff works, believe me I am no expert on how these Byzantium like deals are cooked up and implemented, but I do know a scheme, even if it is legal, when I see one. Whether you are a republican, a democrat, or an independent, you should at least be aware that this kind of stuff goes on all the time.

The question in this situation is will looking into this practice and trying to reform it squeeze more than just profits from the system? There are a lot of hard working people out there; I know this because I see how hard they work when they come to my house every few months or so to check on the machine and replenish my supplies, making a day-to-day living in this industry. Is it worth maybe wiping out a whole service industry to contain medical costs? What if you worked for one of these companies, would that change your mind?

It’s times like these when I contemplate issues such as this that makes me feel a little more comfortable with the fact that the voters chose the other guy.

So much for politics. I just felt I had to point this out.

More about ARDS here  http://www.pulmonologychannel.com/ards/treatment.shtml

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5 Responses to Getting Use to Being Disabled…

  1. larry durstin says:

    You put August 20 on this entry. My mother always told me not to wish my life away

  2. Thanks for the heads up…

  3. Liz Schulte says:

    Thanks for the update, Chris. Your writing and ability to share your story is excellent as ever. Please keep it up, I hope its helping you get through this stressful period.

    As someone who is new to this medical procedure, can you tell us a little about what your life will be like after the transplant? I know you’ll be taking a lot of anti-rejection drugs, but will you otherwise be able to live life as you used to, without oxygen, having your energy restored?

    You and Laurie are in my prayers as always.

  4. Bonnie says:

    Thanks Chris. You brought up some issues that I was unaware of. You have always been a good teacher.

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