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On Inherited Disease: In This Case, Polycystic Kidney Disease (PKD)

06 Aug

One could argue with some validity that the human predicament itself is a fine example of inherited disease. In the same way that we human beings inherit our culture, our language, our religions and technologies alike from our ancestors, so too do we receive from them their bad habits, addictions, pestilences, weaknesses, and diseases. Here “Nature Versus Nurture” is a moot battle, as whether these inheritances be due to training or genetics really makes no difference for the end result now under discussion. As products of our parents and our culture it can even be argued that we are nothing more than the sum of these circumstances. If you are lucky, let’s say in example, you get your father’s above average intelligence and drive, your mother’s patience and understanding, and your grandmother’s literary gifts. Too often, though, we are not so lucky, and if you get your father’s wits, you also get his bad temper, and his impatience, which somehow outweighs all the genetics your mom provided, and all the teachings society gave you about staying calm. While I for one will never say we mere mortals have absolutely no control over what we are and will become, it has to be admitted by everyone that “pre-existing conditions” in a very real way restrain our possibilities (“Milieu” as used by JP Sartre, for instance). So, while you might be lucky enough to strike that gold, and glean from your mother’s DNA her compassionate nature and sense of the mystical, you at the same time could get, perhaps, her bad kidneys, or the conditions for renal failure.

It gets even more complicated, when considering the genealogy of our beings, for in some instances, concerning what you inherit, you do not even know from whence it came. Perhaps you are a bookworm and a reader, yet the child of a man and woman who last picked up a book in their teens, and only then to swat a fly or provide support for finishing the crossword puzzle in the TV Guide. From where, you wonder, comes this predilection for the written word? One could say mandatory schooling, but then this process has not had the same effect on even your own parents. Only by searching deeper down the lineage do you discover that it was your great-great grandfather who was a writer and man of the pen. Culturally, from which primordial creed do we inherit the necktie, our attractions, and our norms? Who is responsible?

Polycystic Kidney Disease is a genetic disorder that results in eventual kidney failure for approximately half of all people diagnosed with it. There is voluminous information available online if anyone is interested in reading about it. A Google search for “PKD” today will show a lot of the links, under numerous different URLs, monopolized by the Chinese, maybe trying to make some money with surgical tourism, maybe on the cutting edge of therapy (evidence appears inconclusive). There are also plenty of the useful sources such as WebMD and so on. But a good amount of this information is also by thoughtful people who themselves have the disease. They seek to educate others, form alliances, and inform others of this disease’s processes from a firsthand account. Having this disease myself, and currently preparing for a merging of a vein and artery (known as a fistula) because, I am told, it is the only way to get the blood to flow fast enough for dialysis (…), I intend this to be neither so informative nor so sympathetic an account. Perhaps from being in the half who do lose their kidney function (creatinine 9), I find the entire predicament dreadful (no good options), the science/medicine speculative and inconclusive, and at times, paradoxical (calcium blockers and calcium supplements AT THE SAME TIME, e.g.), and the smell of big business through it all (over 50k a year per person, meals not included) just makes it stink for me so much the worse.

Parantheticals aside, the point for this essay, other than allowing this steam to vent, is that staying active, eating right, acting correctly, and so on, has had little to no bearing on the situation at all. For people with such a genetic disease, it is precisely circumstances beyond their control that has “caused” their plight. Any attempt to “blame” the disease on mom or dad or booze or cigarettes not only belies a blatant ignorance as to how these things work, but is also ethically the same as blaming the flu on the person who gets it.

As we inherit our greatnesses, so too do we inherit our doom. Diseases social, communicable, epidemic, as well as inherited, are as much a part of the world as they ever have been. Together they fall under the category of Things Beyond Our Control. We can try to change them, always we try to change these things beyond our control, in the case of disease, these messengers of death. Centuries ago, for a person with – staying with our example – PKD or dying kidneys, at some point the urine stopped and he or she died. Decades ago, if you were one of the few fortunate and your problem was found early, and if you were lucky again, you got one of the few dialysis chairs in the country, and maybe lived a year or two. Now, today, you can dialyse several ways, at home or even on the go, and if you have anyone that loves you for about 100k you can have a new kidney put into your body. These methods could get you 15 years of “bonus” life, or more. So, it seems science is doing its job?

Let’s just stay with the example and answer “Maybe,” for now. For consider a moment the situation. Centuries ago the person with the disease, oh maybe my great to the 20th power grandfather Oomga Cain, foraged and hunted, or scribed, or did whatever he did until he couldn’t do it anymore. He died from the disease he never knew he had, and the luxury, which should be obvious, is that he had literally no idea of his fate, or even WHY he was dying. He got to enjoy, or at least consume completely with no extra anguish or anxiety, his remaining days. Now maybe my great-great grandfather got to the machine, decades ago, and after he started he died after two years. So while he had to remain on dialysis to his last days, knowing how he was to die if not when, he nevertheless “lived” longer than he should have, literally feeding the machine. Now, today, to achieve these miracles, such as transplanted organs, and enough life on dialysis to father a new child and see it graduate high school, the requirement is handfulls of pills every day for the rest of your life, as well dependencies and burdens on all around you as long as you stay alive. And, in the end, the practices that save you can kill you at any time due to infections and all the mechanical manipulation and stress. Progress, as science itself can tell you, is slow and often unsteady. The same practices considered today “cutting edge” medicine will, decades from now, likely be seen as just this side of barbaric, and in the case of PKD, perhaps based on faulty assumptions. But again, staying with our theme, some things cannot be changed, but they can be delayed, or avoided.

Why, then, do we elect to fight these inherited diseases, knowing that all we are doing is delaying the inevitable? Why, I mean really, why would a person so skeptical of the science concerning the very disease he has nevertheless decide to take the treatment and try and prolong his existence? Well because some things fall under the category of Things We Can Change. While we cannot, as humans, always change or effect our life as we wish, due to circumstances beyond our control, we can adjust and alter or thinking, and indeed ourselves, and make the best of the situation. At first this seems like a head-in-the-sand approach to frightful events. On the contrary, the way I see it, we humans fight these diseases by standing directly up to them, and by showing them that we cannot be beaten so easily. That it will take more than even their sorry, watered-down genetic defilement, to deter us from living. Yes I think when it comes to some diseases all the options stink and that really, all things and relations TRULY considered, just going as long as you can and then dropping dead is often the better option. But I believe still, despite the hauntings of the past on our genetic makeups and thoughts, that we are born free. In this case, at least for me, this carries a lot of significance. What this means is that any lover of freedom is particularly averse to any thing or situation or circumstance which attempts to limit or curtail his freedom in any way. Inherited diseases, of all kinds, attempt to place limits on us, by telling us we can no longer do X, or must now do Y. This very diction, for me, is anathema, as I know it was, and is, for every person who knew the way out, and instead decided to live and fight on. Diseases, seen in this way, may very well be teaching tools, as obstacles to overcome, maybe so we can get where we need to be.

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Posted by on August 6, 2014 in Uncategorized

 

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