Almost two decades ago I was for a time sharing my story of kidney disease on the net. That web site resulted in many others finding the path to life as I had done. Over time as my health returned and my renewed life offered and demanded of me the web site became a challenge to maintain and I stopped my efforts to keep it going.
But now I realize that the information I presented has not resurfaced on the Internet with the same context since I allowed it to lapse. As I look back I can see that without my little effort I am ashamed to think of the numbers of people who may have not found that life saving path.
Being an ecologist my life has been all about living within a field of science where your can never think you will have all the definitive answers, ecology is much more about subtle clues and hints, it like trying to find a rare and shy animal in a uncharted jungle. There is as much instinct and intuition as there is knowing.
So into a new jungle of nephrology, and as it turned out immunology, that I found myself in I was somehow at home and comfortable with tracking down an elusive thing, it was after all not just any new life-form I was looking for, I was on a trail looking for my very own life.
What I found wandering the jungles and deserts of medical science was that medical practicioners are unbelievably conservative. For the most part if they were out in my world in the wilds of forests or deserts or on the open sea they would never in a million years actually take a chance at looking behind objects for the unknown. Sometimes there is no choice, it is do or do not. A simple choice of seeking life or a finding a miserable death. What I also found was a very promising trail to a cure for more than myself alone.
As my life was so consumed by my kidney research and medical discovery it’s not surprising that everything else was pushed into the background. A terrible bicycle accident left me waking inside a CAT Scanner and with agonizing shattered bones. A divorce followed very quickly. It was also a time when the Internet was just beginning to become prominent and useful. The combination of a personal life or death medical quest, a personal nature as a science geek, personal tumult, and the crazy all powerful internet made me into a bit of a strange bird.
I discovered early on that my condition looked to my reading to be an autoimmune disease. This was and is now pretty well accepted in the medical community and some treatments for my condition were to simply bash the daylights out of your immune system.
The first choice hammer for this bashing were steroid treatments and when I say bashing I mean it. The side effects of high dose steroids are not at all pretty, one is called “moon face” which describes how ones face balloons into something resembling a man in the moon cartoon. All manner of other physical and worse psychological symptoms are common. Ewww, not a first choice for me.
Then there were other immune suppressing drugs like the ones use in transplant patients to prevent rejection of foreign organs, many with similar side effects to steroids. There then hove into view another problem, very few doctors were willing to prescribe such dire medications. It was clear with a little research that much of this hesitancy over treating IgAN was due to the high rate of legal claims by patients and families who suffered under such medical treatments the results of which resembled assaults. I was keen to try but my doctors were very much not.
Then one day I finally came to be reading all about the history of immunology and the human immune system. My ecologist mind, typical of all ecologist, is to be a lumper and reach for broad explanations of complex systems as opposed to waiting for precision knowledge of a thousand factors.
It seemed to me life on earth, including me, has evolved two immune systems. One is the primitive immune system that is common to us and everything one every other branch of the evolutionary tree of life right down to round worms. This primitive immune system evolved eons ago before worms became man. It did a good job and Nature has a rule in evolution, “if it ain’t broke, don’t fix it.”
The primitive immune system is a tough customer. It began and still lurks in the front end of life, in a worms and in our mouth and nearby. As that is where we take in almost everything into our bodies that is where a simple hammer and anvil approach to dealing with good vs. bad is a good evolutionary invention. Bad things get hit very hard and fast by big mean anti-body molecules, some of those big bad molecules are named IgA.
The more modern immune system also makes IgA molecules but as evolution learned sometimes you can do the job with a tiny jewelers hammer instead of a 20 pound sledge hammer and damage fewer good things in the vicinity.
I had found the trail to a French pathologist, a man who studied biopsy samples, and in my case the guy name Berger had named a kidney diseased that was know to French doctors as the kidney disease common to men with frequent sore throats. The disease became known as Berger’s disease but her in North America we call it IgA Nephropathy.
Berger had the cure but as one of his colleagues told me the problem was that in the many patients that they treated they found one consistent theme. The hopelessness and despair of the diagnosis of having the disease was so great that inevitably when the patients had the treatment and were cured they were so focused on getting away from the dark despair of having the disease that they never wanted to see another doctor again. Thus the required detailed clinical follow-up on the success of the treatment was always found lacking by their critical and skeptical colleagues.
The treatment looked simple, an hour in surgery, a week of recovery, and if all went as Berger had observed I might never want to see a Nephrologist ever again.
So tonsillectomy it was…. but wait it was not so easy.
First thing that happened was my kidney doctors objected. Too much risk they said, adult tonsillectomy sometime have complications. Then it was “it is not an approved treatment for your disease.” Then arguments about how it could not work, even challenges to me, not a doctor, coming up with this treatment regime, I could not possibly be competent to understand the intricacies of their guild. After much trying I was perfectly shut out of being given a tonsillectomy.
After a time of frustration turning into depression I managed to come up with a path.
So I go to my general practitioner Hey doc I say what can you do for me about snoring. Oh he says let me look in your throat. Then he says I’ll refer you to one of our ENT’s, what a giant tree being out of Tolkein… nah an Ear, Nose, and Throat specialist. Some days later I meet the ENT, he says what’s up I tell him about my “snoring problem.” I don’t tell him that I’d been back to the Stanford med school library and discovered that tonsillectomy is one of the most common elective surgery’s in adult men and is routinely prescribed to treat snoring.
He looks in my throat and says, OK I see you’ve got big tonsils, we could take them out and it would very likely clear up your snoring. What a great idea I say when can you do it. It’s a Monday and he walks out to check with his nurse, he comes back in to the exam room and says. “How about this Thursday in our out patient clinic?”
Great I say, what should I expect?
It just take an hour for the surgery, we’ve learned how to do this so well the new techniques have almost no complications at all. You’ll not be happy for ten days, the recovery is quite painful, but well controlled with pain medication. You need to plan on being out of commission for those full ten days.
I leave the clinic, wow just a few more days this feels right.
The surgery takes place. The doctor was spot on, there is a lot of pain and I am not at all able to do much of anything but lie around in great discomfort for ten days.
Six weeks later I go back to Stanford where I have been going for months as one of their volunteer lab rats in the study of people with rapidly progressive IgAN. There I expect my regular full day with IV’s in both arms, being force fed liquids laced with all manner of strange research chemical markers including radioactive tritium. They are forcing my kidneys to make as much pee as possible and taking every drop for study along with plenty of blood. I have perhaps the most intensively studied kidneys on the planet.
Below is a bit of my urinalysis data showing the drop of protein loss following initial control of my high blood pressure then the important and lasting drop into normal range following my tonsillectomy… It’s now 19 years and I am still holding my protein.