How I Live with Acute Respiratory Distress Syndrome

Just a few years ago, I was the kind of person who rarely took anything more than a multivitamin and the occasional dose of ibuprofen. I had managed to get through kidney stones, severe back and hip injury, as well as the usual assorted aches and pains in life without a desire for anything stronger. Without this desire, I felt safe from the dangers of addiction and the need to learn how to prevent drug addiction in myself. I did not realize that I would soon live with chronic pain.

Oh, there were times when I was tempted to accept a doctor’s offer for more certain relief. But as someone who came of age in the 1970s and 1980s, I had seen far too many people take a pill for the right reason only to fall quickly to dependency upon them. I had managed to escape those potentially lethal times of teenage and young adult experimentation with little experience under my belt and no particular wish that I had done more.

As far as I was concerned, I was home free. If I could escape late teens and early 20s without drug dependence, I figured I would never have to worry about it because the likelihood that I would ever require potentially addictive drugs seemed behind me.

Unfortunately, I was wrong. After a nearly fatal illness called Acute Respiratory Distress Syndrome or ARDS hit me in mid-2003, I was left with a slow-healing hole in my chest and scar tissue that to this day brings agony with each breath. I was finally released after nearly three weeks in Intensive Care with a host of drugs. These were mostly antibiotics and anti-inflammatory medications, but there was also a patch for pain along with a very small dose of synthetic codeine for breakthrough pain.

I did all the right things, of course: I stopped smoking, began to exercise, and to try to build my lungs into better shape. But nothing stopped the pain. Today, every breath drawn from my left lung feels like I am fanning a terrible fire. And those are the good days. On the bad ones, I feel as if my lung is being repeatedly stabbed and I still have nightmares that I am stabbed when the pain is severe as I go to bed.

For this reason, I continue to take fairly low doses of pain killers. I hate this so much that I refuse to take enough to actually kill the pain (which might need such high doses as to affect my breathing). Instead, I take what is just adequate to neutralize some of the worst effects. I’ve even gotten rather good at knowing when I must take a dose because I find myself incessantly holding my breath rather than inhale. I am now a chronic pain sufferer and I don’t like it one bit.

For me, it’s breathing that creates the most pain, which seems sadly ironic. If the pain was in my knee or hip, I could rest the joint when I did not actively need it. But how does someone take a rest from breathing?

I even went so far as to try to learn how advanced yogis control their breathing. I was certain that if I was able to master their capability, I could breathe mostly with my unblemished right lung rather than my problematic left one. While the exercises helped me regain overall lung volume and restored my former high oxygen saturation rates, I never quite got the technique. I remain a two-lung breather, conscious of every breath because each is punctuated with pain.

What bothers me more than the nearly constant state of pain is the need to take medication to reduce its ugly nature. I have scar tissue but am no longer ill. In fact, I probably have never been healthier. Once easily winded from smoking and extra weight, I now can move across the roughest, snow-clotted terrain with impunity. Impunity, that is, except for my chronic pain and a desire for relief from it.

My doctors have suggested the only possible permanent relief is surgery that would extricate the scar tissue from my lungs. But not only is this an expensive proposition, it may leave me in more pain for a few months than I now face. For someone who has to deal with a high degree of pain on a daily basis for the better part of three years, it is not easy to consider scheduling more. Scarier still is the idea that the procedure will not work or that it will actually leave me in more chronic pain than I currently experience. As in most areas of medicine, there are few guarantees.

Yet the pain has also taught me some vital lessons. One is an admiration for those who have even higher levels of discomfort than myself and yet whom still continue to function without hardly a blink. A second lesson is that you can never assume you will not be hurt by something just because you were impervious to it in the past.

Another is an understanding that our country, despite the sophisticated nature of science and medicine here, has adopted a rather schizophrenic policy with regard to pain control. Anyone who suffers with chronic pain that requires anti-pain drugs knows they are under intense scrutiny and the doctors who prescribe them under even more monitoring. Every pill, every session of pain, and every prescription filled demands careful accounting.

An incredible number of people come into play in the doctor-patient relationship when pain medication is prescribed. These include local, state, and federal agencies, any of which at any time can launch a probe into what a doctor orders and what a patient receives.

Physicians usually face the most risk because their ability to write any prescription whatsoever can hinge on whether they are under investigation. But, as the news has shown us in a few extreme cases which usually involved charges of taking far higher doses than any doctor would prescribe, even patients may be caught in the cross-fire. Their confidential medical records can be subpoenaed, explored, and laid open to the public.

I am fortunate, however. My doctor is great at both trying to be sure I have what I need to continue to live life while not falling victim to drug dependency. He and I speak frankly about pain levels and effectiveness of dose on a regular basis. I know that I can go to him if I ever feel as if I am slipping from proper usage to the shadowy world of oncoming addiction. It is this strong relationship that makes me feel able to take what drugs I must have while avoiding any other use.

Yet I cannot help but resent the machinery around us that makes it a risk for him to prescribe needed medication. I also resent both the pain itself and my inability to make it longer than a day or two without a dose if I am to be productive. Without even the low dose I take, I am more apt to sit at my desk consumed by the pain rather than working.

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