These last few weeks have really been a wake-up call for me, a call that drove home to me just how fragile, how on the edge my life has become…

By Christopher Green

Let’s face it; no one ever really wants to come to grips with just how vulnerable they truly are. For me, it was a combination of recent events that made it crystal clear that my life is rapidly slipping out of my control.

About a month ago, as I outlined in the last couple of updates to the blog, the AC crapped out during a monumental heat and humidity wave. I was pushed up against the wall health-wise as I was literally gasping for air even when I had the O2 concentrator cranked up over 4 liters per minute.

I was left in the position of taking muscle relaxers and sleeping pills in the morning in order to try and get through the worst part of the day asleep. At that point, it became obvious that it was better to try and get through my daily tasks in the cool, a relative measure to be sure, of the night than try to wade through the thick, soupy air of the day.

It was perhaps the most uncomfortable I have been with my life condition since I stopped drinking 27 years ago. This includes breaking my hip in a spectacular car accident over one hundred miles from home, being in Intensive Care units several times because of my respiratory problems and dealing with the deaths of my parents.

It also truly brought home to me how fragile my life had become.

Think about this for a moment, if you will. No matter which way my life goes from this point on, any change, whether it is it of my own volition or due to external circumstance, in my situation can alter my life drastically.

If I get a lung transplant, I will be forever tethered to anti-rejection drugs. If something happens to block my access to those drugs, I would immediately be at risk of a painful death.

If I don’t get a lung transplant and continue on the way I am now, I will be at the mercy of the insurance companies as they, not the doctors, are more in control of what kind of treatment I will receive and how extensive that treatment will be.

That is the naked truth behind the system that none of my friends who were and still are against Health Care reform are willing to face. There is rationing and that rationing is not by need but my means. Just as there are no atheists in a foxhole, I doubt there are many true free marketers when they or a loved one happens to end up in Intensive Care.

Back in late 2009, I was hospitalized for a nasty infection. After more than two weeks, they finally got a handle on what it was that I had and started in on a cocktail of strong antibiotics that seemed to be doing the trick. I was finally able to sleep, eat and actually walk around my room.

By my 15th day in hospital, I was starting to get better, but I was still very weak, disoriented and hopped up on industrial strength Morphine and other assorted pain inhibitors. I was on tranquilizers as well.  Then, from out of nowhere, a young man came marching in around 2:00 in the afternoon to tell me that I was going to be released that day. In fact, he was basically telling me to get up and get out. (He sort of looked like Eric Cantor, now that I think about it.)

I protested, pointing out that I did not have any clothes, no way to get home. I didn’t even have a key to get into the house. He said that it was not his problem and that they would call a cab and I would be left off at my house whether I had a key or not. He really did say that.

Now they had not told me, Laurie or even my doctors that they were intending to release me that afternoon. I had to call Laurie and she had to leave work on short notice in order to come and get me.

Every time I have been in the hospital I made it a point, a hint form my sister, to build a rapport with the staff on the floor. My sister is a nurse practitioner and her husband is a doctor, so many of the people on staff grew to like me. Plus, I try never to be a pain in the ass. I know how hard they work and I don’t punch the help button unless I truly need help.

It seemed odd to me that the other nurses that I had gotten to know over the last 16 days were now avoiding me. It was almost as if they were ashamed at how I was being treated. As Laurie wheeled me out and down to the front of Fairview Hospital, they made it a point not to make eye contact with either of us.

The reason I bring this up now, in this context, is because I am sure that the insurance company said, enough is enough; Christopher has got to go. I am positive that it was not my doctors’ decision to cut me loose. Both of my doctors are gentlemen and so I did not ask for their opinion on what happened that day. Nevertheless, from looking at their faces as I explained how I was released at my next appointments with them, I could see they were not happy at all.

The point is that the insurance companies are now determining not only who gets medical care, but also deciding what kind and how much care any patient will get.

Now that Medicare, my secondary insurance, is coming under increased political pressure, where does that leave me and the millions of other people who suddenly find themselves out on the street when a bureaucrat decides enough money and resources have been expended.

The hospital arranged for a traveling nurse to come over and check my vitals. And that was a good thing because within a few days, I did start to get better. I was also put in charge of my IV drugs. I did it all right, no air bubbles, which I was totally frightened about, but man was I nervous the first few times I changed my lines or cleaned out the port. I guess watching that Quincy episode about killing someone by injecting air into a person’s IV stuck with me.

The cause of my distress in the above situation was not that I was incapable of handling some of my own health care needs. No, it came from being blindsided by the hospital. If they had prepared me at least a day in advance, I could have handled it all. But the abrupt nature raised my anxiety so high that I am sure it had an effect on my medical situation.

I say bureaucrat because it does not matter if the person adjudicating your claim comes from the private or the public sector, they are still bound by rules and regulations that are designed to make the decision easy. Rules are rules, after all. To me, it marginalizes what the US has always professed to be above.

So, how could I not be apprehensive about the future? In times like these, I am truly grateful that I have a wonderful bunch of doctors who truly care about my wellbeing.

Meeting with Dr. Budev this week after completing the latest round of benchmark tests, anyone could tell she was fond of me. More important, I think I represent, from what I gather, a small percentage of the people she sees. She likes my overall positive attitude and trusts my knowledge of my situation. When she talks to me, it is exactly how I talk with my clients.

She told me that I am one of the longest pre-transplant patients that have been under the umbrella of the transplant program at the clinic.  It has been 7 years now.

She chastised me for being so cavalier about my AC situation. (BTW, the AC was probably gone last year and what the two guys did before Don came over to replace my unit was a complete waste of money.) She made it clear that if something like this happened again to call her and she would find some place for me to go.

So we started talking about the tests and it turns out my performance on these tests were down almost 20% from the levels of last March. She wasn’t that concerned because all my other more static tests: heart condition, BP, etc, pointed to an infection or as she called it, an exacerbation, and not permanent.

Just in case, I am going back in three months instead of the usual 5-6 months to see if there was any significant deterioration due to the strain I was under for the last few months. Anyway, I am now on three antibiotics over the next ten days, Levofloxacin, Azithromysin and Tobi. Today is one of the three days where I will be taking all three. The other days I will be taking just two. Boy, having those three in my body today zapped my meager amount of energy.

It was almost too much to type out his post.

Here are links to the drugs I mention above…

http://www.medicinenet.com/levofloxacin/article.htm

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a697037.html

Before I left, I asked Dr. Budev  if I was fooling myself into thinking I was in control, that I wasn’t as bad as I truly was? She basically told me to never forget you are living on the edge as it is but that the positive attitude is so essential to good health and that I should never let my optimism waver.

She said just be realistic with yourself.

What I have been doing is probably, by always trying to appear as healthy as I can be, doing a disservice to my friends, colleagues and clients. She said  people might not realize just how truly sick I really am and that I should better explain myself to people.

Now I am blessed with a group of clients that, for the most part, understand about my condition. I want to take some classes, seminars, really, so that I can prepare myself to remain in compliance with the new IRS regulations for tax preparers. I certainly do not need a whole mess of new clients and I’m certainly not looking for any significant expansion of my business. I just want to be able to serve the people who have grown to depend on me.

But I am, because of the troubles I have had over these last several weeks, going to cut out accounting from my services offered. I just don’t have the energy to keep up with all that is doing bookwork unless, of course, it is only to prepare a tax return.

The new regulations by the IRS are designed to keep the profession of tax preparers up to date. And that makes sense. There are tons of unscrupulous “tax preparers” out there, whose sole purpose seems to be getting their hands on a chunk of some desperate persons refund. These sleaze balls get around it by offering “bridge loans” to people who come into get their tax return done. These new regulations should put a stop to the cruel fleecing of people who are truly desperate for money.

And while I am on the subject the government, the drama going on in DC and more than a few state capitals has started to underscore that nothing should ever be taken for granted.

I am very ill at ease about what is going on politically in this country. For the first time, it is truly personal. I realize that we are now in dire straits. I truly understand the need to make changes in how we raise and then allocate our shared resources. But to make titanic changes just for the sake of change is a disservice to the millions of people who have worked and sacrificed to get us to where we are today.

I find it distressing that our political situation has gotten so intransigent, that people are ready willing and disturbingly giddy, it seems, to be making life and death decisions just to accumulate political power. And, make no mistake about it, this all comes at the expense of the people they were elected to serve.

I think it is time that the political folks realize that once they are elected they represent everyone from their district, from their state and not just those who voted for or bankrolled them.

I had the pleasure to work in the Ohio House of Representatives while in college and respected members from both sides of the aisle because they knew that once the election was over, they had to work for all the people. It was the one true lesson I took with me from that experience.

Perhaps those days of shared interests are gone. Perhaps I was and, I guess, continue to be naïve.

But at the end of the day, we are all in this together. If we continue to elevate the public discussion for even the most benign of governmental tasks into political brinkmanship, where does that leave the hundreds of millions of people who depended on the government based on promises made? Are we really that callow as to allow for collateral damage in the form of imperiled American Citizens just to score fleeting political points?

I hope not. I hope we are better than this.

I know this was a long post, but there was a lot to say.  I am including a link to my latest recording over at the youtubes. It’s a special song for me and I wish to share this one with everyone who reads my blog. I usually keep the blog seperate from the recordings, but this one needs to be here.

http://www.youtube.com/watch?v=ASwXPGGkdVg

Thanks for your support. This post should get us over 15,000 views. I am told this is a lot for a blog. If so, I have all of you to thank!

 

 

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One Response to These last few weeks have really been a wake-up call for me, a call that drove home to me just how fragile, how on the edge my life has become…

  1. MissP says:

    We have you to thank for allowing us into your world, and allowing us the opportunity to understand what your issues are, as they are for so many people who face such serious healthcare threats.

    You have opened the door for our understanding, and we thank you for having had the courage to do that.

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